Kathy Giusti, Founder and Executive Chairman of the Multiple Myeloma Research Foundation, To Address U.S. Senate Committee in Favor of Increased Access to Patient Health Data to Advance Scientific Research

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Kathy Giusti, Founder and Executive Chairman of the Multiple Myeloma Research Foundation, To Address U.S. Senate Committee in Favor of Increased Access to Patient Health Data to Advance Scientific Research

By MMRF on September 15, 2015

September 15, 2015

On Wednesday, September 16 at 10:00 AM EST, Kathy Giusti, Founder and Executive Chairman of the Multiple Myeloma Research Foundation (MMRF) will deliver remarks on the need for widespread access to patient data in order to further scientific research to the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP). The hearing “Achieving the Promise of Health Information Technology: Improving Care Through Patient Access to Their Records,” builds on the series intended to address issues with the federal government’s six-year-old, $30 billion program meant to encourage adoption of electronic health records (EHRs) at doctors’ offices and hospitals.

Norwalk, Conn., September 15, 2015 – On Wednesday, September 16 at 10:00 AM ET, Kathy Giusti, Founder and Executive Chairman of the Multiple Myeloma Research Foundation (MMRF) will deliver remarks on the need for widespread access to patient data in order to further scientific research to the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP).
The hearing “Achieving the Promise of Health Information Technology: Improving Care Through Patient Access to Their Records,” builds on the series intended to address issues with the federal government’s six-year-old, $30 billion program meant to encourage adoption of electronic health records (EHRs) at doctors’ offices and hospitals.
“I’m truly honored to participate in this hearing and to raise awareness of the value of electronic health records based on the lessons I’ve learned as a patient and leader of a non-profit organization committed to driving positive clinical results for patients,” said Kathy Giusti, who founded the MMRF in 1998 following her diagnosis with multiple myeloma, a rare blood cancer. “We understand firsthand the major role data and technology will play in advancing research and improving patient outcomes. If we are able to harness the two and increase the aggregation of electronic health records, patients will be able to better manage their health and the research community will have vast information to advance science.”
Giusti’s remarks will underscore the value of EHRs and the need for technology to better support patients, integrate data and advance cures using multiple myeloma, an uncommon and fatal disease, as an example. The MMRF has worked alongside academia, government, industry, and technology partners building a databank to help identify important targets and speed drug development.
The U.S. Senate HELP Committee is led by Chairman Lamar Alexander (R-Tenn.) and Ranking Member Patty Murray (D-Wash.). During Wednesday’s hearing, Committee members Susan Collins (R-Maine) and Elizabeth Warren (D-Mass.) will serve as acting Chairman and acting Ranking Member respectively. Giusti will be joined by witnesses Raj Ratwani, PhD, Scientific Director, National Center for Human Factors in Healthcare, MedStar Health, Assistant Professor of Emergency Medicine, Georgetown University School of Medicine and Eric Dishman, Intel Fellow, General Manager For Health And Life Sciences, Intel Corporation.
A live video of the hearing will be available on Wednesday, September 16 at 10:00 AM ET here: https://www.help.senate.gov/hearings/achieving-the-promise-of-health-information-technology-improving-care-through-patient-access-to-their-records.
For more information on the Multiple Myeloma Research Foundation, visit https://themmrf.org/.
About Kathy Giusti, Founder and Executive Chairman, Multiple Myeloma Research Foundation (MMRF) and Multiple Myeloma Research Consortium (MMRC)
Kathy Giusti, a multiple myeloma patient, is the Founder and Executive Chairman of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). She has more than two decades of experience in the pharmaceutical industry, previously holding senior positions at G.D. Searle and Merck. Since founding the MMRF in 1998, Giusti has led the Foundation to establish innovative, collaborative models in tissue banking, genomics, and clinical trials. The MMRF’s unique end-to-end system in precision medicine is accelerating new treatments for patients. Today, Giusti is widely recognized as a champion of open-access data sharing and a strong advocate for patient engagement, not only in their cancer care, but as part of the research and drug development process. Giusti currently serves on the White House Precision Medicine Initiative Working Group and the Harvard Business School Health Advisory Board. She has previously served on the President’s Council of Advisors on Science and Technology (PCAST), the National Cancer Advisory Board (NCAB), and the National Cancer Policy Board (NCPB). Giusti’s leadership has earned her several prestigious awards and recognitions. Most recently, she was ranked #19 on Fortune Magazine’s Worlds’ 50 Greatest Leaders. In 2011, she was named to the TIME 100 List of the world’s most influential people. Giusti has been featured on the Today Show, NBC Nightly News, CBS Evening News, Fox News, CNN, and Bloomberg. Her efforts have also been profiled by The Wall Street Journal, The New Yorker, Harvard Business Review, The New York Times, Forbes, WIRED, and Fast Company. Giusti graduated magna cum laude from the University of Vermont College with a Bachelor of Science degree in Biological Sciences and holds an MBA in general management from Harvard Business School.
About the Multiple Myeloma Research Foundation (MMRF)
The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c) (3) non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy’s diagnosis with multiple myeloma. The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. As the world’s number-one private funder of multiple myeloma research, the MMRF has raised more than $300 million since its inception and directs nearly 90% of total budget to research and related programming. As a result, the MMRF has been awarded Charity Navigator’s coveted four-star rating for 11 consecutive years, the highest designation for outstanding fiscal responsibility and exceptional efficiency.
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Revised International Staging System for multiple myeloma

Stage Criteria

I ß2-M<3.5mg/L and albumin ≥3.5 g/dL and Absence of high-risk DNA abnormalitiesaand Normal lactate dehydrogenase (LDH)

I Not Stage I or III

III ß2-M≥5.5mg/L and
Presence of high-risk DNA abnormalitiesaor
High LDH

ß2-M = beta2-microglobulin
aHigh-risk DNA abnormalities include del(17p) and/or translocation t(4;14) and/or translocation t(14;16)

Measuring your prognosis

Test Indication Values Indicating a More Favorable Prognosis

Beta 2-microglobulin
(β2-microglobulin or β2-M) Higher levels reflect more extensive disease and poor kidney function <3 mg/mL

Albumin level Higher levels may indicate better prognosis ≥3.5 g/dL

Lactate dehydrogenase (LDH) level Higher levels indicate more extensive disease Age ≤60yrs.: 100-190 U/L
Age >60yrs.: 110-210 U/L

Albumin level Higher levels may indicate better prognosis ≥3.5 g/dL

FreeliteTM serum free light chain assay Abnormal results may indicate poor prognosis (also indicates risk of progression of MGUS or asymptomatic myeloma or symptomatic myeloma Free light chain ratio MGUS: 0.26-1.65
Asymptomatic myeloma:0.125-8.0
Symptomatic myeloma:0.03-32

High Impact Topics Videos

High impact topic videos, or HITs, are videos that use engaging animations and narration to present information on topics of importance to myeloma patients and their caregivers. Presented in a patient-friendly manner and viewable on iPads, tablets, and smartphones, these HITs bring to life and explain concepts that can sometimes be difficult for patients and caregivers to understand.

The MMRF wishes to thank the following reviewers and contributors to these HITs: Craig Emmitt Cole, MD; Faith E. Davies, MBBCh, MRCP, MD, FRCPath; Marc Davis; Irene Ghobrial, MD; Colin Todd Kennedy; Amrita Y. Krishnan, MD; Ola Landgren, MD, PhD; Louise Miller Lavin, BSN, MSN, LPCC; Joshua Richter, MD; Nina Shah, MD.

Title Description

MRD (Minimal residual disease) Learn what MRD is, how it is measured, and what it might mean if your doctor tells you that you are MRD positive or MRD negative.

Immunotherapy Understand how your immune system interacts with your myeloma, and how new immunotherapies are helping patients’ immune systems recognize and destroy myeloma cells.

Genomics Hear how doctors can use genomic information from your myeloma cells to provide therapy that is tailored to your myeloma subtype.

Learn Your Labs This video provides information on laboratory tests that myeloma patients may undergo. Learn about why and how the tests are done and what the results mean.

Autologous Stem Cell Transplantation (ACST) Learn the risks and benefits of ACST, a key part of a personalized treatment plan for many myeloma patients.

Clinical Trials Discover how clinical trials work.

Multiple Myeloma Precursor Conditions Find out the difference between monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM) and what factors may put individuals with these conditions at higher risk for progressing to multiple myeloma.

MMRF's The Right Track(TM) Program This HIT shows patients who have been diagnosed with multiple myeloma how to get on the right treatment path to their best outcome as quickly as possible.

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Biked: Bryce to Zion with the Road to Victories 2018 Team

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Hiked: Mt. Democrat, Mt. Fuji, Havasu Falls (Grand Canyon), Patagonia, Mt. Washington (countless times)

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Senior Associate, Events and Partnerships

Favorite 5K Fundraising Tip: Make your ask in several different ways (in person, on Facebook, by email, etc.!)

Cheer Squad: My boyfriend, parents, two brothers and best friends.

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Manager, Events and Partnerships

1 year with the MMRF Walk/Run Team

Favorite 5K Fundraising Tip: Set a goal and break it down for your supporters (Example: If 20 people donate $25 I’ll reach my goal of $500 towards a cure!).

Cheer Squad: My parents, sister and local community.

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Race Manager, MMRF Team for Cures 5K Walk/Run Program

3 years with the MMRF Walk/Run Team

Favorite 5K Fundraising Tip: Take advantage of the power of social media.

Cheer Squad: My family. (Father: Ed, Mother: Susan, Sister: Kiera) And my super supportive girlfriend, Elyse.

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Meet Jane:

Director, Events & Partnerships

13 years with the MMRF Endurance Team, and 3 years with the MMRF Walk/Run Team

Favorite 5K Fundraising Tip: Cast a wide net. You never know who will surprise you.

Cheer Squad: My husband Michael and 3 grown kids.

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Meet Lauren Bruce

Manager, Peer-to-Peer Fundraising (Endurance)

Your support and cheerleader from registration to race day

8-time marathon, 30+ half marathon finisher

Favorite Race Day Tip: Wear more sunscreen and body glide than you think you need!

Marathon Mantra: Yes, you can!

Meet Jane

Director, Events & Partnerships

13 years with the MMRF Endurance Team

8-time Marathon Finisher (Chicago, Boston 2X, Disney, National, Philly 2X, Mystic)

Favorite Race Day Tip: You will not sleep well the night before your marathon, so don’t sweat it! Hoard sleep leading up to race weekend

Marathon Mantra: You did your homework. You’ve got this!

Cheer Squad: Husband and 3 grown kids

Contact Me

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Faculty Date Event Topic View Recording Transcript

Shaji Kumar, MD May 16, 2022 FAQs on Precursor Conditions (with Updates) View Recording Coming Soon

Noopur Raje, MD
Kathleen Lively, RN May 17, 2022 FAQs on Clinical Studies View Recording Coming Soon

Sandy Wong, MD
Donna Catamero, ANP-BC, OCN,
CCRC April 22, 2023 FAQs on Multiple Myeloma Following Relapse (with
Updates) View Recording Coming Soon

Gurbakash Kaur, MD
Sonia Patel, NP March 14, 2023 FAQs on Newly Diagnosed Multiple Myeloma (with Updates) View Recording Coming Soon

Benjamin Derman, MD
Sarah Major, PA February 15, 2023 FAQs on MM Diagnosis, Prognosis, and Initial Treatment (with Updates) View Recording Coming Soon

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Candice Del Rio

MS, BSN, BA, RN – Manager, Patient Navigation Center

Candice Del Rio is the Manager of the Patient Navigation Center at the MMRF. She is responsible for overseeing the daily operations of the PNC and guiding myeloma patients through their disease journey. She most recently worked at the Massachusetts General Hospital for over 11 years as a Staff Nurse in the inpatient Hematology/Oncology unit and as a Clinical Research Nurse in the Bone Marrow Transplant Department. Prior to her career in nursing, she worked in marketing and advertising in the real estate industry for 4 years. She earned a BA degree in Communications with a concentration in Sociology from Boston College and completed her nursing education with BSN and MS degrees from Northeastern University.

Brittany Hartmann

RN, BSN – Patient Navigation Center

Brittany Hartmann, RN, joins the MMRF as a Nurse in the Patient Navigation Center. Brittany worked as a Myeloma Clinical Coordinator in a high-volume call center at the Ruttenberg Treatment Center at Mount Sinai Hospital in New York City for the past 5 years. Here, she supports myeloma patients in a variety of ways from triaging calls, to educating patients on their myeloma, labs and test results, and coordinating with research and management to implement integral changed and streamline processes for access to new treatments. Prior to Mount Sinai, she worked as an Oncology nurse at Saint Barnabas Medical Center in New Jersey. Brittany earned her Bachelor of Science in Nursing at the University of Delaware, where she had the opportunity to be a student nurse for a private physician for over a year.

Rocio Scavino

RN, MSN – Patient Navigation Center

Rocio worked as a Multispecialty Oncology Clinic Nurse at the University of Miami for 2 years. Prior to the University of Miami, she worked as a patient navigator with Cardinal Health to help patients close the gaps between their care and treatment. Her background also includes organizing and interpreting clinical oncology data for Flatiron Health. She is a certified translator, bilingual in Spanish, and is a member of the Oncology Nursing Society. She currently supports the MMRF CureCloud study initiative to assist patients interested in enrolling, collaborates with the clinical research team, and builds trusting relationships with multiple myeloma patients to empower them to learn more about their disease. Rocio earned her Bachelor of Science in Nursing from Florida International University and her Master of Science in Nursing at St. Thomas University.

Adrian Rosenkranz

Chief Operating Officer
Salesforce Essentials

Adrian Rosenkranz, a Multiple Myeloma caregiver, is the COO of Salesforce Essentials; in that role he’s responsible for steering the company’s operations, vision, and customer experience. With over a decade of experience in enterprise software, Adrian is widely respected for being a boots-on-the-ground leader with a track record of driving growth. Prior to his current position, Adrian held roles at Salesforce in Sales Strategy & Ops, Sales, and Corporate Marketing, giving him valuable experience in multiple revenue functions.

Adrian serves on the board of the Stanford Athletics Buck/Cardinal Club, which supports all varsity sports at Stanford University. He has also served as an advisor for Harvard Business School's Kraft Precision Medicine program, using his experience with direct-to-consumer teams to help nonprofits accelerate precision medicine efforts via direct-to-patient engagement.

Adrian earned his BS from Stanford University, where he also served as the kicker for the Stanford football team under Coach Jim Harbaugh. He currently lives in San Francisco, where he loves to exercise and explore the outdoors.

Anne Quinn Young, MPH - Chief Marketing and Development Officer

Anne Quinn Young, MPH, is the Chief Marketing and Development Officer at the MMRF and is responsible for overseeing the strategy and execution of the organization’s marketing, communications, patient engagement, and fundraising efforts in support of the organization’s mission to accelerate precision medicine and a cure for every patient.

Anne has been named to the PharmaVoice 100, and represents the MMRF on a number of working groups and committees including the Direct-to-Patient (DTP) solutions team at the Harvard Business School (HBS) Kraft Precision Medicine Accelerator and the Cancer Support Community Frankly Speaking About Cancer: Multiple Myeloma National Advisory Board. She has co-authored a number of peer-reviewed abstracts and publications on the MMRF Precision Medicine Model and identifying knowledge gaps and opportunities to improve patient empowerment and engagement in optimizing their own outcomes.

Prior to joining the MMRF in 2002, she was a consultant in the Healthcare Practice of Datamonitor, a global market research and business intelligence company. She previously worked in healthcare public relations at Burson-Marsteller and the Chandler Chicco Agency, following a postgraduate internship at the Department of Justice, Antitrust Division. Anne has a Masters of Public Health from the Mailman School of Public Health of Columbia University and graduated cum laude from Dartmouth College with a Bachelor of Arts in Government.

Lori Tauber Marcus

Founder
Courtyard Connections

Vice Chairman of the Board
MMRF

Lori Marcus is an independent board director and keynote speaker. She is currently serving in the role of Vice Chairman of the MMRF board. Lori is also the Chairman of the board of DNA Diagnostics Center, a growing leader in private DNA testing services, where she guides overall strategy and governance for corporate growth. Additionally, she is an independent Board Director for SHARE, a 40-year-old survivor-led organization based in New York City that provides support, information, and resources to women affected by breast and ovarian cancers. Lori also currently serves on the CMO advisory board for VentureBeat and is a board advisor to Carrington Farms.

Most recently, Ms. Marcus served as Interim Global Chief Marketing Officer for Peloton Interactive, Inc., a private equity and venture capital backed home fitness innovator. At Peloton, Lori drove business growth with strategy, brand marketing, communications, PR, social/digital media, consumer insights, data analytics, creative services, and community engagement. Prior, Lori was Chief Global Brand and Product Officer at Keurig Green Mountain. With more than 30 years of broad-based marketing and general management experience, Lori was responsible for global brand and product management for the Keurig system of innovative brewers and beverages. During her tenure at Keurig Green Mountain, she also led the company’s global marketing efforts and all aspects of e-commerce, digital/social media, marketing insights, and graphic design. Lori was also Chief Marketing Officer of The Children’s Place Retail Stores and SVP Marketing at PepsiCo.

Lori is a graduate of the Wharton School, University of Pennsylvania.

Mike Mortimer

Managing Partner and Founder
GHO Capital

Chairman of the Board
MMRF

Mike is an experienced healthcare industry senior executive who brings a 30+ years track record in operational and management positions.

In his former role as an Executive Vice President in the core leadership team at Quintiles (now IQVIA), Mike was instrumental to driving the international growth of a now leading global Clinical Research Organisation. Prior to Quintiles, Mike was a Senior Vice President at Charles Schwab, responsible for the global retail and internet organizations.

Mike currently sits on the boards of Envision, X-Chem, Ardena, BioAgilytix, Validant and Alcaliber and has overseen successful exits from Quotient Sciences and Caprion Biosciences.

Originally from the US and holding a bachelor’s degree in Behavioural Sciences from the Ohio State University, Mike has worked and lived across the USA, UK and Asia.

Paul Giusti

President
Riverwoods Holdings, LLC

Paul Giusti is the former President and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF). Prior to the MMRF, Mr. Giusti worked as a Chief Executive Officer, leader, executive and entrepreneur for over 30 years; he has founded, managed and led a variety of businesses. Early in his career, Mr. Giusti worked as an executive for GE where he held a number of management positions with a wide range of responsibilities.

Mr. Giusti has worked closely with the MMRF since its founding in 1998. In addition to chairing the successful $100 million capital campaign, he has served as a consultant for a number of foundation projects, led several MMRF outreach efforts and spoken on behalf of the MMRF.

Mr. Giusti holds a Bachelor of Science degree from the Colorado School of Mines and an MBA from Harvard University.

Kathy Giusti

Founder and Chief Mission Officer
MMRF and MMRC

Faculty Co-Chair, HBS Kraft Precision Medicine Accelerator
Harvard Business School

Kathy Giusti, a multiple myeloma patient, is the Founder of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). She is also the Chief Mission Officer of the MMRF. Kathy is the Henry & Allison McCance Family Senior Fellow at Harvard Business School, where she serves as Faculty Co-Chair of the HBS Kraft Precision Medicine Accelerator. Kathy has more than two decades of experience in the pharmaceutical industry, previously holding senior positions at G.D. Searle and Merck.

Since founding the MMRF in 1998, Kathy has become a widely respected leader in establishing innovative, collaborative research models in the areas of tissue banking, genomics, and clinical trials. These models are dramatically accelerating the pace at which lifesaving treatments are brought to patients and are building an end-to-end solution in precision medicine. Today, she is recognized as a pioneer of precision medicine, a champion of data sharing, and a strong advocate for patient engagement.

In 2016, Kathy was named Faculty Co-Chair of the Harvard Business School (HBS) Kraft Precision Medicine Accelerator, a $20 million program endowed by Robert Kraft and the Kraft Family Foundation. Under her leadership, the HBS Kraft Precision Medicine Accelerator convenes best-in-class leaders from science, business, and technology to identify and solve challenges slowing the advancement of precision medicine. The HBS Kraft PM Accelerator disseminates best practices and models to overcome these challenges, and ultimately enables faster adoption of high-impact innovations.

Kathy has earned numerous prestigious awards and recognitions, including being named 1 of 3 Top Business Leaders Disrupting Medicine by Fortune Magazine and #19 on Fortune’s World’s 50 Greatest Leaders list. She was also named one of the world’s 100 Most Influential People by TIME magazine. Kathy received the Open Science Champion of Change award by the White House. In addition, she has been honored with the American Association for Cancer Research Centennial Medal for Distinguished Public Service and the Healthcare Businesswomen’s Association’s Woman of the Year Award.

Kathy serves on the advisory boards of Verily and Verily’s Project Baseline and is a member of the Harvard Business School (HBS) Health Advisory Board. She a Member of the FasterCures Non-Profit Council. Kathy previously served on President Obama’s 2015 Precision Medicine Initiative Working Group, the President’s Council of Advisors on Science and Technology (PCAST), National Cancer Advisory Board (NCAB), and the National Cancer Policy Board (NCBP).

Kathy has been featured on the Today Show, NBC Nightly News, CBS Evening News, Fox News, CNN, and Bloomberg. Her efforts have also been profiled by Fortune, The Wall Street Journal, Harvard Business Review, The New York Times, Forbes, The New Yorker, WIRED, and Fast Company.

Kathy received her MBA in general management from Harvard Business School and holds an honorary Doctorate from the University of Vermont.

Learn more about Kathy.

Sarah Coulter

RN, OCN

Sarah has been a registered nurse for the past five years, specializing in Hematology Oncology and Bone Marrow Transplant. She has spent over ten years in the Oncology field and started her career at Yale New Haven Hospital. Over the last three years, Sarah worked as a traveling nurse in California, South Carolina, Florida, Texas and Maryland. She earned her nursing degree from St. Vincent’s School of Nursing. She is chemotherapy certified and is currently in school to obtain her master’s degree in nursing education.

Erin Mensching

RN, BSN, BA, OCN – Patient Navigation Center

Manager

Erin is the Manager of the Patient Navigation Center. She is passionate about helping to guide myeloma patients and to further research for the myeloma community. She has been a registered oncology nurse for eleven years. She served on the Patient Council Committee at the Norwalk Hospital and is a member of the Oncology Nursing Society. Erin is a graduate of Fairfield University’s School of Nursing and earned her bachelor’s degree in psychology from the University of North Caroline at Chapel Hill. Prior to becoming an oncology nurse, Erin was a healthcare representative for Pfizer and Sanofi-Aventis.

Christopher Williams - Vice President of Business Development

Christopher Williams was named Vice President of Business Development at the MMRF in 2017, responsible for business development, partnership and joint venture efforts for the foundation. He is a business development leader with a strong scientific background, specializing in the pharmaceutical and diagnostics space. Most recently he served as the VP of Business Development at WaveSense where he was in charge of their US commercialization strategy and product expansion, as well as being responsible for overseeing their strategic partner relationships.

Previously Chris was VP of Business Development at SkylineDx, providing commercialization strategy for their oncology portfolio. With PerkinElmer, as the Market Segment Leader in Oncology, he had responsibility for their cancer diagnostic products including strategy, launch activities, external presentations and marketing execution.

While at Millennium Pharmaceuticals, Chris held roles in the Protein Science, Technology Development and Proteomics groups. He also had scientific roles at Schering-Plough and the Sandoz Research Institute.

Chris holds graduate and post-graduate degrees in Microbiology/Molecular Biology and Protein Biochemistry from Clemson University.

Steve Varley - Vice President, Development

Steve Varley joined the MMRF team in 2018 and is responsible for the fundraising efforts of the organization. Most recently he served as Associate Dean for Advancement at Yale University, leading the fundraising efforts for Yale School of Nursing. Previously he worked as the Vice President for Advancement at Gardner-Webb University where he organized and successfully executed the University’s most recent capital campaign. Steve received a BS degree from Chowan University and holds an MBA from Gardner-Webb University.

Laura Gilman - Vice President of Events

Laura Gilman is the Vice President of Events at the MMRF where she manages the entire events portfolio. Prior to joining the MMRF in 2010 Ms. Gilman was the Vice President of Citigroup’s Investment Research Conferences where she directed the design and execution of the bank’s high profile research conferences and events. Before joining Citigroup, Ms. Gilman was the Director of Meetings, Client Relations and Incentives at Victoria’s Secret Beauty. She began her career at Morgan Stanley managing the bank’s IPO Roadshows. Ms. Gilman has over 20 years of experience designing and executing events and initiatives that generate revenue. She received her B.A. in English Literature from the Catholic University of America and lives in Westport, CT with her husband and son.

Karen Dietz, JD, MBA - Chief Administrative Officer and General Counsel

Karen Dietz, JD, MBA, is the Chief Administrative Officer and General Counsel. Karen is responsible for overseeing the Legal and Human Resource Departments, corporate governance, compliance, contributes to strategic planning, oversees planning and execution of the organization’s operating plans, and collaborates with other disease foundations to share insights from MMRF success.

Additionally, Karen has concentrated efforts on optimizing the governance structure of the MMRF’s subsidiary companies: Myeloma Investment Fund (MIF) and the Multiple Myeloma Research Consortium (MMRC). Karen has worked with the consortium sites and pharma companies to launch nearly 100 multi-center clinical trials including the first-ever myeloma platform trial, MyDRUG.

Prior to joining the MMRF in 2007, Karen worked as In-House Counsel at Océ Imagistics North America a subsidiary of Canon Printers, was the Legal Counsel for the United States Junior Chamber of Commerce, and worked at the Law Firm of Attorney Raymond Lubus, Corporate Payroll Services, Orion Mobility, and Praxair.

Karen earned her Doctorate of Jurisprudence and her Masters of Business Administration from Western New England University. Karen earned her Bachelor of Science in Justice and Law Administration from Western Connecticut State University.

Kenneth Anderson, MD

Director
Jerome Lipper Multiple Myeloma Center, Dana-Farber Cancer Institute

Dr. Anderson graduated from Johns Hopkins Medical School. He trained in internal medicine at Johns Hopkins Hospital and completed hematology, medical oncology, and tumor immunology training at the Dana-Farber Cancer Institute.

Dr. Anderson is the Kraft Family Professor of Medicine at Harvard Medical School and serves as Chief of the Division of Hematologic Neoplasia, Director of the Jerome Lipper Multiple Myeloma Center, and Vice Chair of the Joint Program in Transfusion Medicine at the Dana-Farber Cancer Institute.

He received the Waldenstrom’s Award in 2003 for his translational research directed to the development of novel therapeutics targeting the myeloma cell in its microenvironment and is a Doris Duke Distinguished Clinical Research Scientist.

In addition to serving on the Board of Directors of the MMRF, Dr. Anderson serves as Chairman of the MMRF’s Scientific Advisory Committee, Chairman of the Multiple Myeloma Research Consortium, and Chairman of the National Comprehensive Cancer Network’s Multiple Myeloma Clinical Practice Guidelines Committee.

Rob Miani - Chief Financial Officer

Rob Miani joined the MMRF team as Chief Financial Officer in 2016. Most recently he was the Vice President of Finance and Corporate Controller of Aptuit, LLC, a global contract research organization providing integrated early discovery to mid-phase drug development services in the pharmaceutical industry. Rob has over 20 years of leadership experience in the private and public sectors, holding managerial positions in the renewable energy, private equity, Internet and technology industries, including Davenport Newberry, Oak Investment Partners and INT Media Group. He began his career with Arthur Anderson LLP in the Assurance and Business Advisory Services Division. Rob is a CPA and received his BS degree in Accounting from Fairfield University.

Steven Labkoff, MD, FACP, FACMI - Chief Data Officer

Dr. Steven Labkoff is the Chief Data Officer at the Multiple Myeloma Research Foundation. Dr. Labkoff is a global medical leader with a track record of developing cutting edge strategies towards new healthcare delivery models. He has demonstrated success in the convergence of medicine, life sciences and policy across disparate organizations including government, non-government organizations (NGOs), health plans and academic institutions. He joined the MMRF after a 25-year career in healthcare informatics for the Life Science Industry where he worked on a wide array of issues ranging from the secondary uses of healthcare data for Life Sciences, health information technology policy, Big Data and analytics and medical affairs. He was most recently Executive Director, Medical Strategy at Purdue Pharma. In that role he led Purdue’s Big Data initiative as well as medical strategy for both pipeline and inline products. Prior to Purdue he was Vice President of Life Sciences at Intelligent Medical Objects focused on leveraging medical vocabularies, ontologies, and terminologies for Life Science customers.

From 2011-2014 he was Executive Director, R&D Informatics and Head of Strategic Programs in AstraZeneca’s Research & Development Information Department where he led groups on Real World Evidence and Payer Evidence, Personalized Medicine and Biomarkers and Clinical Trials Design and Interpretation, dedicated to leveraging healthcare data for the development of ethical pharmaceuticals.

Previously, Dr. Labkoff was an instructor of Medicine and Medical Informatics at Brigham and Women’s Hospital, Harvard Medical School. He completed a post-doctoral fellowship at Harvard Medical School and Massachusetts Institute of Technology in Medical Informatics where he focused on the uses of point-of-care computing and mHealth. He did his cardiology training at the University for Medicine and Dentistry of New Jersey, his medical training at the University of Pittsburgh and at the Albert Einstein Medical Center in Philadelphia. He is a Fellow of the American College of Physicians and the American College of Medical Informatics, and an executive board member of the American Medical Informatics Association.

Hearn Jay Cho, MD, PhD - Chief Medical Officer

Hearn Jay Cho, MD, PhD joined the MMRF as Chief Medical Officer (CMO). Dr. Cho is responsible for developing the MMRF’s clinical research strategy and accelerating drug development programs as well as for leading the Multiple Myeloma Research Consortium (MMRC), a group of 25 leading research centers dedicated to researching and advancing treatment options for multiple myeloma patients.

Hearn Jay Cho is an Associate Professor of Medicine at the Icahn School of Medicine at Mt. Sinai and an Attending Physician with the Multiple Myeloma Service at the Mt. Sinai Tisch Cancer Institute. Dr. Cho’s laboratory is investigating novel therapies for multiple myeloma in two areas.

First, they are investigating immunologic therapies with a focus on using cutting edge genomic and immunologic assays to map the interaction between myeloma and the immune system in the tumor microenvironment. These projects illuminate the mechanisms of action of novel immune therapies in both laboratory models and clinical trials and will inform the design of rational combinations. This program has a special focus on immunologic therapy in the setting of autologous stem cell transplantation for myeloma.

Second, Dr. Cho’s group discovered that two of the type I Melanoma Antigen GEnes (MAGE), MAGE-A3 and MAGE-C1, are commonly expressed in multiple myeloma and are correlated with progression of disease and proliferation. They demonstrated that type I MAGE plays a critical role in conferring resistance to chemotherapy and inhibition of apoptosis in myeloma cells through regulation of Bcl-2 family proteins and the tumor suppressor p53. Dr. Cho’s group is conducting biochemical and structural studies to identify novel pharmacologic strategies for inhibition of type I MAGE activity in myeloma.

Randi S.

51, from Fort Lauderdale, FL
Initially Diagnosed: 2016
Current Diagnosis: Relapsed, Refractory
Treatment Received: SCT, Cytoxan, Revlimid, Velcade

Upon Randi’s diagnosis, she conducted an abundance of research and tried to keep an optimistic mindset. She decided to pursue the treatment plan that had a more holistic approach, and if it came to a point in which she needed a transplant, she wanted to pick the environment that felt the most nurturing. Randi knew that there were many steps and lifestyle changes that she had to make towards her healing. Her diagnosis affected her in medicinal, environmental, holistic, mental, personal and spiritual ways. She continues to maintain her super healthy lifestyle and practices good dietary habits. It was difficult for Randi to believe that she had cancer, as she had to learn to recreate herself and was grateful to be alive. Randi is very active in the multiple myeloma community and participates in races all over the country. She told her doctors that she was willing to do her homework to propose to them ways in which she could slowly return to participating (to a certain degree) in some of her active hobbies and most importantly, she has learned to listen to her body.

Evelyn H.

62, from the Houston, TX area
Initially Diagnosed: 2014
Current Diagnosis: recently completed 2nd Autologous Stem Cell Transplant
Treatments Received: bortezomib, dexamethasone, lenalidomide , carfilzomib , daratumumab, and pomalidomide

Evelyn has been living with MM for almost nine years. What she has learned from this was to expect the unexpected. She had her first relapse in January of 2021, which was unexpected. After completing treatment she was back into a complete response. What she has found helpful to persevere along the journey was a strong support team – in healthcare, spiritual aspects, family and circle of friends. She believes it’s imperative to have the entire team working in tandem. Developing short term and long term treatment plans with her healthcare team, and allowing room for adjustment as needed has been a part of process. Evelyn looks forward to helping others navigate their unexpected.

Tricia C.

59, from Rocky Hill, CT
Initially Diagnosed: 2014
Current Diagnosis: In Remission
Treatment Received: SCT, RVD, IVIG, Clinical Trial Participant

In 2005, Tricia was dealing with extreme fatigue. Her primary care physician ordered routine bloodwork and found that she was severely anemic. She was then sent to a local hematologist who did a bone marrow biopsy. At this time she was diagnosed with smoldering myeloma after receiving a second opinion. It wasn’t until 2014 that she was diagnosed with active Multiple Myeloma. Tricia participates in MMRF events in hopes of furthering multiple myeloma research. She enjoys sharing her personal experience with other myeloma patients and is looking forward to helping others understand this disease better and find resources for them that will help with their personal myeloma journey.

Lisa B.

37, Trumbull, CT
Initially Diagnosed: MGUS 28, MM 30
Current Diagnosis: Multiple Myeloma-stable
Treatment Received: Revlimid, Velcade, Dex, Autologous SCT, Pomalyst, Carfilzomib @ MSK in NY

Lisa was diagnosed with MGUS at age 28 - discovered during a routine physical exam showing high protein levels in her bloodwork, but she was otherwise asymptomatic. After 18 months, MGUS developed into MM, requiring immediate treatment at age 30. Dealing with cancer at such a young age was shocking, challenging and unrelatable/lonely, but with a strong support system, cancer mentors, great doctors/treatment, The MMRF, a positive outlook, education, faith and perseverance she reached complete remission after transplant and lived a very 'new normal' life, still able to balance career, life, and her condition. Lisa relapsed after about 5 years, but her condition is currently stable. Lisa wants to help other cancer patients by mentoring, sharing experiences, and offering resources, but most importantly helping them realize they are not alone.

Ethan H.

28, from Worcester, MA
Initially Diagnosed: 2013
Current Diagnosis: In Remission, Multiple myeloma with solitary plasmacytoma
Treatment Received: Radiation, Bone replacement, SCT, VRD, Ninlaroe

I was diagnosed with multiple myeloma seven years ago at the age of 22. It started with pain in my hip that was quickly diagnosed as cancer. I understand the disruption to “normalcy” that a multiple myeloma diagnosis may have caused for you. I’ve made it my mission to make a difference for others dealing with this disease. This time period can be filled with uncertainty, but the thing that has always helped, whether it was the day of the diagnosis or currently, is the importance of having people in your life that are there for you.

Casey Joe W.

36, from Acworth, GA
Initially Diagnosed: 2008
Current Diagnosis: In Remission
Treatment Received: Bone replacement, SCT, Velcade, Revlimid, Ninlaro

I was diagnosed with Multiple Myeloma when I was 26 years old. I was a bit lost at first because I was very young when I received this diagnosis, but I soon realized that everyone experiences it differently. Since my diagnosis, I’ve had to cut back on a lot of physical things I used to do, like exercising. I’ve learned how to manage my energy and put it towards things that matter most to me. I am very motivated to share my experiences with others battling this disease and hope to empower other patients during their journey.

Annamarie K.

50, from Norwalk, CT
Initially Diagnosed: Husband JP in 2014
Current Diagnosis: Relapsed, Refractory

My husband, JP, was diagnosed with multiple myeloma six years ago at the age of 48. We do whatever we can to support the MMRF and to keep a positive mindset about our situation. It has been a journey from day one, but I feel we are confident going forward. I’m thrilled to be at this point in our lives to be able to help others. I’m so appreciative of the help we’ve received, and I’m grateful for this opportunity because we understand how this journey with multiple myeloma can be overwhelming.

Carmen P.

52, from Little Silver, NJ
Initially Diagnosed: 2002
Current Diagnosis: Relapsed, Refractory
Treatment Received: Tandem SCT, Allogenic SCT, RVD, Clinical Trial Participant

Carmen’s experience leading up to her diagnosis was unique in that she did not present any symptoms and was diagnosed via pre-pregnancy bloodwork. It revealed that she had low platelets and was anemic. At the time, Carmen was diagnosed with smoldering multiple myeloma, as she did not meet the criteria to be diagnosed with active multiple. Carmen’s multiple myeloma status continued to be smoldering for a total of 8 years until December 2010. Carmen strives to stay positive and maintain a healthy and active lifestyle. She has persevered and embraces the changes that her diagnosis has caused in her life.

Andrew G.

67, from Harrisburg, PA
Initially Diagnosed: 2013
Current Diagnosis: In Remission
Treatment Received: SCT, RVD, Revlimid for maintenance

Andrew’s biggest challenge after receiving his diagnosis was educating himself on this disease. His healthcare team embraced his determination to educate himself, which gave him additional confidence in his doctors. Andrew has kept a positive outlook and is self-motivating. One motivating factor he had was retirement; although, he only wanted to semi-retire. He remains an active grandfather to his two young grandsons and helps his daughter by babysitting them. He feels that his multiple myeloma journey has made him a better person in that he is more compassionate and understanding.

Jessie D.

54, from Vermillion, SD
Initially Diagnosed: 2016
Current Diagnosis: Smoldering
Treatment Received: None at this time

Jessie is determined to not let her diagnosis define her and dominate her life; therefore, she has taken control of the situation by continuing her research and education on her diagnosis and learning the importance of practicing self-awareness and self-advocacy for her own health. She has become dedicated in her efforts to incorporate being health-conscious in her lifestyle. Prior to her diagnosis, Jessie’s sense of self was connected to her career. Now, she's revisiting this and learning how to reinvent herself and the lifestyle she plans to lead.

Jeffery G.

59, from Chicago, IL
Initially Diagnosed: 2010
Current Diagnosis: Relapsed, Refractory
Treatment Received: Tandem SCT, Ninlaro, Revlimid, Velcade, Pomalyst, Darzalex

Jeffery stresses the importance of staying motivated and positive. He manages his lifestyle and nutrition to do what he can to have a full and active life. He is determined to continue his active hobbies. Before and after his diagnosis, he has continued to participate in his hobbies as a marathon runner, hunter, fisherman, and hiker. He climbed Mt. Kilimanjaro earlier this year and is taking a summer vacation with his wife to Montana to backpack and hike. Doing the things he loves helps him feel empowered against his disease. He also has found strength in becoming an active member of the multiple myeloma community. Jeffery has been extensively involved in the "mother ship" of MMRF. Jeffery is passionate about raising awareness of MMRF and helping others navigate their way and to find their path.

Daniel Auclair, PhD – Chief Scientific Officer

Dr. Daniel Auclair is the Chief Scientific Officer for the MMRF and has been with the organization for over a decade. He is responsible for oversight of the development and execution of the organization’s scientific plan. In addition, he is responsible for all the MMRF preclinical and translational activities. Dr, Auclair is also deeply involved in the Multiple Myeloma Research Consortium (MMRC), a network of 25 multiple myeloma centers of excellence across the U.S. through which 82 multiple myeloma clinic trials have been run to date.

Dr. Auclair was selected by PharmaVoice in 2017 as one of the 100 Most Inspiring People in the life-sciences industry. After completing his graduate studies in Montreal and postdoctoral fellowship at Dana-Farber Cancer Institute/Harvard Cancer Center where he conducted seminal multiple myeloma genomic work, Dr. Auclair then spent a decade in early cancer drug discovery in biotech/pharma, mostly at Bayer where he worked, among others, on overseeing the Bayer-Millennium cancer genomics drug collaboration as well as on Nexavar and Stivarga. He also worked at the Broad Institute of MIT and Harvard where as a senior manager in the Cancer Program he was involved in a wide range of academic and industry collaborations centered around cancer genomics and precision medicine initiatives.

Michael Andreini – President and Chief Executive Officer

Michael Andreini is the President and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). Michael brings nearly 15 years of strategic consulting and operational experience in the life sciences industry. Prior to joining the MMRF, Michael was an Associate Principal at IQVIA in the consulting services organization where he developed strategies for biopharma, medical device, and non-profit organizations to drive innovation and operational excellence across a diverse set of business challenges including R&D and launch strategy, commercial due diligence and portfolio optimization, and organizational effectiveness. Before joining IQVIA, Michael worked at Fuld & Company, a boutique consulting firm specializing in competitive intelligence and strategy, and prior to that, at Siemens Healthcare Diagnostics in the Global Technical Operations group where he resolved technical issues for immunoassay reagents and systems. Michael earned a B.A. in chemistry with a minor concentration in economics from Colgate University.

Paul Giusti – President, Riverwoods Holdings, LLC

Paul Giusti is the former President and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF). Prior to the MMRF, Mr. Giusti worked as a Chief Executive Officer, leader, executive and entrepreneur for over 30 years; he has founded, managed and led a variety of businesses. Early in his career, Mr. Giusti worked as an executive for GE where he held a number of management positions with a wide range of responsibilities.

Mr. Giusti has worked closely with the MMRF since its founding in 1998. In addition to chairing the successful $100 million capital campaign, he has served as a consultant for a number of foundation projects, led several MMRF outreach efforts and spoken on behalf of the MMRF.

Mr. Giusti holds a Bachelor of Science degree from the Colorado School of Mines and an MBA from Harvard University.

Learn more about Kathy

Kathy Giusti – Founder and Chief Mission Officer

Faculty Co-Chair, HBS Kraft Precision Medicine Accelerator
Harvard Business School

Kathy Giusti, a multiple myeloma patient, is the Founder of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). She is also the Chief Mission Officer of the MMRF. Kathy is the Henry & Allison McCance Family Senior Fellow at Harvard Business School, where she serves as Faculty Co-Chair of the HBS Kraft Precision Medicine Accelerator. Kathy has more than two decades of experience in the pharmaceutical industry, previously holding senior positions at G.D. Searle and Merck.

Since founding the MMRF in 1998, Kathy has become a widely respected leader in establishing innovative, collaborative research models in the areas of tissue banking, genomics, and clinical trials. These models are dramatically accelerating the pace at which lifesaving treatments are brought to patients and are building an end-to-end solution in precision medicine. Today, she is recognized as a pioneer of precision medicine, a champion of data sharing, and a strong advocate for patient engagement.

In 2016, Kathy was named Faculty Co-Chair of the Harvard Business School (HBS) Kraft Precision Medicine Accelerator, a $20 million program endowed by Robert Kraft and the Kraft Family Foundation. Under her leadership, the HBS Kraft Precision Medicine Accelerator convenes best-in-class leaders from science, business, and technology to identify and solve challenges slowing the advancement of precision medicine. The HBS Kraft PM Accelerator disseminates best practices and models to overcome these challenges, and ultimately enables faster adoption of high-impact innovations.

Kathy has earned numerous prestigious awards and recognitions, including being named 1 of 3 Top Business Leaders Disrupting Medicine by Fortune Magazine and #19 on Fortune’s World’s 50 Greatest Leaders list. She was also named one of the world’s 100 Most Influential People by TIME magazine. Kathy received the Open Science Champion of Change award by the White House. In addition, she has been honored with the American Association for Cancer Research Centennial Medal for Distinguished Public Service and the Healthcare Businesswomen’s Association’s Woman of the Year Award.

Kathy serves on the advisory boards of Verily and Verily’s Project Baseline and is a member of the Harvard Business School (HBS) Health Advisory Board. She a Member of the FasterCures Non-Profit Council. Kathy previously served on President Obama’s 2015 Precision Medicine Initiative Working Group, the President’s Council of Advisors on Science and Technology (PCAST), National Cancer Advisory Board (NCAB), and the National Cancer Policy Board (NCBP).

Kathy has been featured on the Today Show, NBC Nightly News, CBS Evening News, Fox News, CNN, and Bloomberg. Her efforts have also been profiled by Fortune, The Wall Street Journal, Harvard Business Review, The New York Times, Forbes, The New Yorker, WIRED, and Fast Company.

Kathy received her MBA in general management from Harvard Business School and holds an honorary Doctorate from the University of Vermont.

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Nicole Sandilands

RN, BSN, OCN

Nicole has been a registered nurse for five years, specializing in oncology and palliative care. She began her career as an inpatient oncology nurse at Yale providing bedside care to patients and then transitioned to Norwalk Hospital where she worked as a chemotherapy infusion nurse. She received her nursing degree from Fairfield University and is currently pursuing her doctorate in nursing practice (DNP). Her research focus is on “Chemo Brain” which is studying the cognitive changes experienced from receiving chemotherapy.

David R. Parkinson, MD

Chairman of the Clinical Advisory Board
Zyngenia. Inc.

From 2007 until 2012, Dr. Parkinson served as President and CEO of Nodality, a South San Francisco-based venture-financed biotechnology company developing technologies to enable personalized medicine and more efficient drug development in cancer and autoimmune diseases.

Before joining Nodality, Dr. Parkinson was Senior Vice President, Oncology R&D, at Biogen Idec, overseeing oncology discovery research efforts and the development of the oncology pipeline. Previously he had served tenures as Vice President and Head of the Oncology Therapeutic Area at Amgen and Vice President and Head of Global Clinical Oncology Development at Novartis. During his tenures at Amgen and Novartis, Dr. Parkinson was responsible for clinical development activities leading to a series of successful global drug registrations for important cancer therapeutics, including Gleevec®, Femara®, Zometa®, Kepivance®, and Vectibix®.

He received his M.D. from the University of Toronto Faculty of Medicine in 1977, with Internal Medicine and Hematology/Oncology training at McGill University and at New England Medical Center. Dr. Parkinson has authored more than 100 peer-reviewed scientific papers, and is a past Chairman of the Food & Drug Administration (FDA) Biologics Advisory Committee as well as a recipient of the FDA’s Cody Medal.

Grace Allison

RN, BSN, OCN, RN-BC – Patient Navigation Center

Grace has been a registered nurse for more than 30 years. She spent the last 28 years working at one of the largest myeloma programs in the U.S., the University of Arkansas for Medical Sciences (UAMS). She was fortunate to have spent her career at UAMS under the tutelage of one of the most well known myeloma physicians, Dr. Bart Barlogie. She received her nursing education in Ireland, and completed a bachelor’s of nursing degree at the University of Arkansas. She is a member of the Oncology Nursing Society and a nationally Oncology Certified Nurse. She is also a board certified medical-surgical registered nurse (RN-BC). She started at the MMRF in Summer of 2020.

Mindy Flinn, MBA – Vice President of Development

Mindy Flinn joined the MMRF in May 2020 as the Vice President of Development where she works with a talented team raising philanthropic support for the organization. She brings over 23 years of development experience to this position. Ms. Flinn spent over a decade in development at Mayo Clinic in Rochester, MN and in Jacksonville, FL, where she oversaw the stewardship of top-level benefactors and served as a major gift officer. She also worked for the LIVESTRONG Foundation in Austin, TX as a major gift officer and was Director of Philanthropic Resources at MD Anderson Cancer Center in Houston, TX. Prior to joining the MMRF, she was Senior Director of Development at Yale School of Medicine. Ms. Flinn received her Bachelor of Science in Biology from Bethel University and a Master of Business Administration from Cardinal Stritch University. Her additional accomplishments include successfully climbing Mt. Kilimanjaro in 2012 as a member of Survivor Summit and skydiving.

Greg Rubenstein - Vice President of Marketing and Communications

Greg Rubenstein is the VP of Marketing & Communications at the MMRF, where he leads all brand marketing strategy and execution in support of the organization.

Prior to joining the MMRF, Greg spent the majority of his career working for Advertising firms like Grey NY, Saatchi & Saatchi, FCB Health, and Deutsch -- servicing clients across a wide variety of sectors, including Healthcare, Technology, Financial Services, and Consumer Packaged Goods. He has brought to market countless products and campaigns over nearly 20 years, including high-profile healthcare launches in Vaccines and Women’s Health. In 2013 he joined a technology startup called Vettery, where he helped to launch the brand and all of its communications while serving as the company’s Chief Client Officer & lead brand strategist.

Greg is a graduate of Cornell University, with a B.S. in Psychology & Human Development. He resides in Irvington, NY with his wife and two sons.

Kristen Donadio

RN, BSN

Kristen has been a registered nurse for a little over 20 years. She spent the last 18 of those years working at the John Theurer Cancer Center (JTCC) in various nursing positions in both the Myeloma and Bone Marrow transplant clinics. Her last 2 years at JTCC were spent as the Administrative Supervisor of the Myeloma Division. She graduated from Stockton University with a degree in Public Health Administration, followed by an Accelerated Bachelor’s of Science in Nursing degree from Fairleigh Dickinson University. She is a member of the Oncology Nursing Society and she holds a certification in chemotherapy/biotherapy/immunotherapy administration. She is currently working towards her master’s degree in Healthcare Administration.

Meryl Zausner

Former Chief Financial Officer
Novartis Corporation

Meryl Zausner has over 35 years of management experience across the pharmaceutical and consumer products industries. Meryl was instrumental in creating the blueprint for the successful Novartis Oncology Business Unit and engineering the launch of the first Novartis shared services organization.  A recognized developer of diverse talent, The Healthcare Businesswomen Association honored Meryl with its prestigious Woman of the Year Award.

For much of her corporate career, Meryl worked at Novartis AG, the Swiss pharmaceuticals company, in roles of increasing responsibility across diversified businesses. From April 2012 through 2014, Meryl was Chief Financial and Administrative Officer of Novartis Pharmaceuticals Corporation in the US, and a member of the Pharmaceutical Executive Committee and Global Finance Leadership Team. While in this role, Meryl also resumed responsibility as Chief Financial Officer and Executive Vice President of Novartis Corporation in the US.

Acknowledging her strong leadership and broad achievements, Novartis selected Meryl to train and serve as a certified Executive Coach to senior executives, a position she held from May 2015 until her retirement at the end of June 2017.  She has a BS in Economics and Accounting from the University at Albany and her CPA.

Meryl is a Board member and Chair of the Audit Committee of the Multiple Myeloma Research Foundation, and Board member of Deirdre’s House, an advocacy center for children who are victims of abuse or neglect.  Former board positions include HBA Advisory Board, PhRMA Audit and Finance Subcommittee member, and the T.J. Martell

Foundation. PharmaVoice magazine recognized Meryl among its Most Inspiring, and she received Gilda Club’s Red Door Honoree. Meryl resides with her husband in Naples, Florida and Long Branch, New Jersey.

Steven Shak, MD

Co-Founder, Chief Scientific Officer
Genomic Health

Dedicated to optimizing cancer treatment outcomes and bringing the patient voice into product development, Steve Shak, M.D. has served as the Co-Founder and Chief Scientific Officer of Genomic Health since 2012, and was the Chief Medical Officer from 2000 – 2013. Under Steve’s leadership Genomic Health used innovative molecular diagnostic methods and rigorous clinical studies to develop the Oncotype DX® breast cancer and colon cancer assays and has maintained an 80% product development success rate. Steve has been a leader in personalized medicine for more than two decades.

Prior to co-founding Genomic Health in 2000, Steve served for 14 years in various roles in Discovery Research and Medical Affairs at Genentech, Inc., a biotechnology company dedicated to using human genetic information to discover, develop, manufacture and commercialize medicines to treat patients with serious or life-threatening medical conditions. Steve led the clinical team that gained approval for Herceptin®, a targeted biologic treatment for breast cancer. He also initiated the cancer clinical trials of the anti-angiogenesis agent, Avastin®.

In addition, Steve discovered Pulmozyme®, a mucus-dissolving enzyme that is approved worldwide for the treatment of the genetic disease cystic fibrosis.

Prior to joining Genentech, Steve was an Assistant Professor of Medicine and Pharmacology at New York University School of Medicine.

Steve holds a Bachelor of Arts degree in Chemistry from Amherst College and an M.D. from New York University School of Medicine, and completed his post-doctoral training at University of California, San Francisco.

Rodger Riney

Former CEO and Founder
Scottrade

Rodger Riney grew up in Kirkwood, Missouri, and graduated from the University of Missouri with a Civil Engineering degree and an MBA.

In 1969, he joined Edward D. Jones & Co. in Saint Louis and later became a partner. In 1980, he left to enter the relatively new discount brokerage industry by starting Scottrade. Over the years, Scottrade evolved into an online brokerage and bank supporting its 3 million clients through 500 branch offices nationwide.

In the fall of 2015, Rodger was diagnosed with multiple myeloma and in late 2017, Scottrade was sold to TD Ameritrade.

In 2019, Mr. Riney started Lightchain Capital LLC, with a focus on various capabilities investing in early-stage biotech technologies with an emphasis on therapeutics for blood cancer and multiple myeloma.

Michael Reinert

Partner
Fox Rothschild LLP

Michael Reinert is a leading music industry attorney who most recently served as Executive Vice President of Business & Legal Affairs for the Universal Motown Republic Group, a division of UMG Recordings, Inc. In that position, he had the pleasure of working with great talent such as Stevie Wonder, Elton John, Taylor Swift, Amy Winehouse, Lil Wayne, Nelly, Jack Johnson and many other platinum selling acts.

Prior to joining Universal ten years ago, Michael was the Vice President of Business & Legal Affairs for PolyGram Records, handling those duties for the legendary Verve Records label and Mercury Nashville Records where he worked with the likes of Herbie Hancock and Shania Twain. Michael started his career in private practice representing many artists, producers and writers before joining the corporate ranks.

Michael was an Adjunct Professor of Law at his alma mater, The Benjamin Cardozo School of Law of Yeshiva University, for ten years teaching Contract Drafting and Negotiation in the Music Industry. He has been a contributing editor to the Practicing Law Institute volumes on the same subject and continues to lecture at various schools and seminars around the country.

He currently serves as the Chairman of the Entertainment Law Initiative of the Grammy Foundation, a division of the National Academy of Recording Arts and Sciences, which focuses on legal education programs for aspiring entertainment attorneys.

Michael attended the Horace Mann School for Boys in Riverdale and Tulane University in New Orleans, a place he considers his second home. He lives in Manhattan with his wife of 30 years, Karen. They have a daughter and two beautiful grandchildren.

Marie E. Pinizzotto, M.D., MBA

President and CEO
Carol A. Ammon Foundation

Marie E. Pinizzotto, M.D., MBA, is currently the President and CEO of the Carol A. Ammon Foundation, a foundation focused on health care and education. Prior to running the foundation, she was president of Drug Safety Solutions, L.L.C., a Pharmacovigilance and Risk Management consulting company whose main focus was narcotics and other high-risk drugs. Prior to starting her own company she worked at Endo Pharmaceuticals Inc. where she was Senior Director of the Global Safety and Pharmacovigilance department. In this role she was responsible for pharmacovigilance of all Endo products, marketed and investigational. Marie was also responsible for the safety components in the following disciplines; Clinical Research, Medical Affairs and Clinical Education and Development. In addition, she led the Risk Management Team and was responsible for the creation and implementation of Endo’s risk management programs. Additionally, she was Senior Director of Report Evaluation and Safety Surveillance for the Women’s Health Division and Consumer Products at Wyeth.

Dr. Pinizzotto received her B.S in Chemistry, magna cum laude, from the University of Pittsburgh, Pittsburgh Pennsylvania and her medical degree from Jefferson Medical College (now Sidney Kimmel Medical College)in Philadelphia. She completed her residency at The Medical Center of Delaware, where she practiced obstetrics and gynecology for nine years. She still maintains privileges at the hospital. Most recently, Dr. Pinizzotto earned her MBA at the University of Delaware.

Currently, Dr. Pinizzotto is the named Chair of Obstetrics and Gynecology at Christiana Care Hospital, Newark, Delaware, and is also a trustee of the hospital. She is a member of the finance committee and has participated on the Quality and Safety Committee at Christiana Care Health Systems.

In addition, she is a board member at Eisenhower Medical Center, Rancho Mirage, California, and also sits on the quality improvement committee. Marie is named Chair, The Marie E. Pinizzotto, MD Chair of Academic Affairs, at Eisenhower Medical Center.

Dr. Pinizzotto is a director of The Carol A. Ammon Foundation, The Multiple Myeloma Research Foundation and the Palm Springs International Film Festival. She also participates on the following advisory boards: Scientific Steering Committee on Personalized Medicine for the Multiple Myeloma Research Foundation; The Presidents Leadership Council of the University of Delaware, the Presidents Leadership Council at Jefferson Medical College and she is one of the founding members of the MGH Leadership Council for Psychiatry at Massachusetts General.

William S. McKiernan

President
WSM Capital, LLC

Bill McKiernan is president of WSM Capital, LLC, a private equity firm he founded to invest in payment and other technology companies. Prior to founding WSM Capital, Bill founded CyberSource Corporation in 1994. CyberSource provides payment processing and other related services to online businesses. He was Chairman and CEO for 16 years. In July 2010, Visa, Inc. acquired CyberSource in a transaction valued at $2 billion. Mr. McKiernan served as Executive Advisor to Visa, Inc. for two years following the acquisition before founding WSM Capital in 2012.

Mr. McKiernan holds a BS from Boston College and an MBA from the Harvard Business School. Prior to founding CyberSource he held positions at Price Waterhouse, IBM, and McAfee Associates.

In addition to the MMRF, he serves on the boards of trustees of Boston College, Bellarmine College Prep, and American Ireland Fund and is a member of Harvard Business School Global Advisors.

Gerald McDougall

Partner
PricewaterhouseCoopers LLP

Mr. McDougall is Partner at PricewaterhouseCoopers Health Sciences Practice, where he provides services to academic medical centers, bioscience companies, pharmaceutical companies, research universities, colleges, health systems, and other research organizations. His practice provides a broad range of research business and compliance services, including strategic and business planning, financial analysis, research compliance, clinical research operations improvement, and information systems implementation services.

In addition, his practice provides support services to the entire research continuum, from grant-funded basic science research, to translational research and clinical trials, including a dedicated group focusing on Clinical Research Consulting services.

Susan Marvin

Chair of the Board – The Marvin Companies

Susan Marvin, Chair of the Board of The Marvin Companies, was part of the third-generation management team in what is today a fourth-generation family owned and operated company.

Active in both profit and nonprofit boards, Susan serves on The Marvin Companies Board of Directors, M. A. Mortenson Company Board of Directors, the Multiple Myeloma Research Foundation (MMRF) Board of Directors, the National Association of Manufacturers Board of Directors, the University of Minnesota Foundation Board of Trustees and she is Chair of the Minnesota Chamber Foundation Board. She is a member of the Young Presidents’ Organization (YPO) Gold.

Prior to her current role, Susan was President of Marvin Windows and Doors where she oversaw the fenestration business.

Susan is a 1979 graduate of the University of Minnesota where she earned an undergraduate degree in Journalism. A native of Warroad, Minnesota, Susan now lives in both Warroad and Minneapolis with her husband, Keith Schwartzwald.

Hugh Martin

Vice President of Strategy, Smart Communities
Verizon

Hugh Martin joined Verizon through the acquisition of Sensity Systems by Verizon in October 2016. Hugh created the vision for Sensity Systems and the Light Sensory Network and is responsible for steering the company’s strategic course. His 35-year track record as an entrepreneurial leader of cutting-edge technology companies, new ventures, and high-growth businesses includes serving at the helm of numerous highly successful organizations. In 2011, he was named CEO for Fortune magazine’s ‘Executive Dream Team: The startup edition,’ acknowledged for his ‘management chops’ and for successfully taking public two companies, in two different industries. Most recently, the World Economic Forum recognized Hugh and Sensity as a Technology Pioneer.

Prior to Sensity, Hugh was chairman and CEO of Pacific Biosciences, a leading company in third-generation DNA sequencing. He founded Pacific Biosciences in 2004 with a team from Cornell University and piloted the company through its IPO in 2010 and commercialization in 2011. Before that, he was chairman, president, and CEO of ONI Systems, a high-speed optical telecommunications systems company he founded in 1998 and took public in 2000. Named the Fastest Growing Company in Silicon Valley in 2001, ONI was sold to Ciena in 2002; Hugh then served as a consultant to Ciena.

During his career, Hugh also was president and director of 3DO, an interactive gaming company; served as a CEO-in-residence at the venture capital firm of Kleiner Perkins Caufield & Byers; and ran desktop engineering for Apple Computer. Earlier, he founded Ridge Computers, designer of the world’s first commercial reduced instruction set computing (RISC) minicomputer.

He earned a BS in electrical engineering from Rutgers, the State University of New Jersey-New Brunswick.

David L. Lucchino

Co-Founder, President and Chief Executive Officer
Frequency Therapeutics

David has played an integral role in launching, building and operating several successful companies in the life sciences. In 2014, he, along with Robert S. Langer at the Massachusetts Institute of Technology and other co-founders, started Frequency Therapeutics with the goal of developing regenerative medicines based on discoveries related to activating progenitor cells.

Before Frequency, David was President and Chief Executive Officer of Entrega Bio, a PureTech Health-founded biotechnology company focused on oral drug delivery technology. Prior to that, David co-founded, also with Dr. Langer, Semprus BioSciences. At Semprus, David oversaw the development of the company’s lead medical product, which focused on surface modifications designed to reduce infection and clotting, and which received FDA and European CE marketing clearance. Semprus was acquired in 2012 by Teleflex, Inc. Prior to Semprus, David worked at the investment firm Polaris Partners.

David currently serves as the Chairman of the Board of Directors of MassBio. He is a member of the College of Fellows of the American Institute for Medical and Biological Engineering and was appointed by Governor Charlie Baker to the Commonwealth’s Science, Technology, Engineering and Math Advisory Council. He also serves as a trustee of Mt. Auburn Hospital, a Harvard Medical School facility, a trustee of the Multiple Myeloma Research Foundation, and a member of the Board of Advisors of Life Science Cares.

David earned a B.A. from Denison University, an M.S. from the Newhouse School of Journalism at Syracuse University and an M.B.A. from the MIT Sloan School of Management as an Alfred P. Sloan Fellow.

Dana LaForge

Partner
Brera Capital Partners, LLC

Dana LaForge is a Partner at Brera Capital Partners, a private equity fund, and the Founder and Managing Partner of Colonnade Financial Group, a private equity services firm.

Prior to Brera and Colonnade, Dana was head of Financial Institutions Investment Banking and Chief of Staff of Banking and Capital Markets at Deutsche Bank and its predecessor companies. Earlier in his career, he was a bond trader and founded the Mortgage Finance Group.

Dana has served on numerous portfolio company boards and is the Chairman of GAB Robins NA. He was one of the earliest Directors of the Multiple Myeloma Research Foundation joining the Board in 1999 and helping guide the Foundation from start up through today serving as the organization’s only Chairman since being elected in 2003.

Dana earned a BS from Washington and Lee University and an MBA from Harvard Business School. He lives in New York City with his wife, Kathleen McCabe and their two daughters.

Rodney Gilmore

Corporate and Business Law
Doty Barlow Britt & Theiman LLP

Rodney Gilmore is an attorney in the California Bay Area and a longtime college football broadcaster.

Gilmore joined ESPN in August of 1996 as a college football analyst. He currently works on ESPN/ABC Saturday telecast and contributes to studio shows including College Football Live, Outside the Lines and SportsCenter. He previously served as an ESPN studio analyst and a contributor to ESPN.com and ESPN The Magazine (out of print as of 2019).

Prior to joining ESPN, Gilmore worked as an analyst with Prime Sports Network in California (1993-95), covering Pac-10 football, along with SportsChannel Bay Area from 1991-93 and the Pacific Sports Network in 1990. He was nominated for an Emmy Award in 1994 for live sports coverage of Pac-10 football.

A 1982 Stanford University graduate with a degree in English, Gilmore was a defensive back under coaches Bill Walsh, Rod Dowhower, Paul Wiggin and George Seifert, and also played baseball for Stanford.

Following graduation from Stanford, he earned his law degree from the University of California at Berkeley (Boalt Hall) in 1986, and was admitted to the California State Bar the same year. He began his law career in Los Angeles with the firm of Manatt Phelps & Phillips, LLP before returning to the Bay Area in 1988. He became a partner in the San Francisco business law firm Greene Radovsky Maloney & Share LLP in 1993. In 1997, he joined the Palo Alto, CA business law firm of Doty, Barlow, Britt & Thieman LLP. Rodney specializes in transactional law with an emphasis on business formation and planning, mergers and acquisitions, and commercial transactions. He also has extensive experience in commercial real estate matters, including sales and acquisitions, financings and leases.

Gilmore is a longtime volunteer for Stanford. He is a member and former officer of two entities sponsored by the Stanford Alumni Association. He previously served as chairman of the Stanford Athletic Board and as a member of the Board of Directors of the Stanford Alumni Association. He is also an active member of several Bar Associations and several local community organizations.

An Oakland, CA native, Gilmore is a member of the Oakland Babe Ruth Baseball Hall of Fame. He lives in the Bay Area with his wife, Marie, the former Mayor of Alameda, CA, and has two adult children (Anthony and Nicole).

Thomas Conheeney

Retired President
SAC Capital

Tom was appointed President of SAC Capital in July 2008. He joined SAC in October 1999 as Chief Operating Officer.

Prior to joining SAC, Tom was President of Investment Management Services, Inc (“IMS”) from 1996 to 1999. He joined Moore Capital /IMS in 1993 and served as its Director of Trading Operations and then Vice President until IMS split off from Moore in 1995. Tom joined Moore Capital /IMS from Goldman Sachs Trust Company, where he was a Vice President with responsibilities for daily operations, technology, and client services. From 1986 to 1993, Tom was in the operations and equity divisions of Goldman, Sachs & Co., becoming Vice President in 1991.

He retired from SAC December 2014.

Karen E. Andrews

Senior Vice President and General Counsel
March of Dimes

Karen E. Andrews is currently SVP and General Counsel for the March of Dimes. Previously Karen was the General Counsel and Corporate Secretary of BBDO Worldwide, Inc. where she was responsible for the management of the legal activities of over 150 individual operating units throughout the world.

Prior to joining BBDO Worldwide, Ms. Andrews was Associate General Counsel and Director of Television Business Affairs at Time Inc. Ms. Andrews began her career in law as a Litigation Associate at the New York law firm of Weil, Gotshal & Manges where she specialized in Entertainment Litigation.

Ms. Andrews graduated cum laude from the University of Vermont with a Bachelor of Science degree in biology and earned her law degree, cum laude, from Temple School of Law.

Ms. Andrews is a member of the American Bar Association and the New York State Bar Association.

In 1998, Ms. Andrews co-founded the Multiple Myeloma Research Foundation with Kathy Giusti.

Podcast Topic	Date
ASCT	January 17, 2023	View Recording	View Transcript
Clinical Studies	November 16, 2022	View Recording	View Transcript
Targeted Immunotherapy	August 30, 2022	View Recording	View Transcript
Bone Health	June 30, 2022	View Recording	View Transcript

Program Chair(s)	Date	Location of Event
Malin Hultcrantz, MD, PhD Joshua Richter, MD	December 20, 2022	Virtual	View Recording	View Slides
Noa Biran, MD Paul G. Richardson, MD	June 29, 2022	Virtual	View Recording	View Transcript & Slides

Program Chair(s)	Date	Location of Event
Andrzej J. Jakubowiak, MD, PhDv Benjamin Derman, MD Monique A. Hartley-Brown, MD, MMSc Jing Christine Ye, MD, MSc	September 10, 2022	Chicago, IL (Online & In Person)	Register Here
Ravi Vij, M.D., MBA	August 20, 2022	St. Louis, MO (Online & In Person)	Register Here
C. Ola Landgren, M.D., Ph.D. Joshua Richter, M.D.	June 18, 2022	Miami, FL (Online & In Person)	View Recording	View Slides
Sagar Lonial, MD Ajay K. Nooka, MD, MPH	April 23, 2022	Atlanta, GA (Online & In Person)	View Recording	View Slides
Laura Finn, MD, MS	March 19, 2022	Virtual	View Recording	View Slides
Jeffrey Allan Zonder, MD	February 19, 2022	Virtual	View Recording	View Slides
Ravi Vij, MD, MBA	January 29, 2022	Virtual	View Recording	View Slides
Harsh V. Parmar, MD David H. Vesole, MD, PhD, FACP	December 4, 2021	Virtual	View Recording	View Slides
Larry D. Anderson, Jr, MD, PhD Ankit J. Kansagra, MD	November 20, 2021	Virtual	View Recording	View Slides

Webinar Topic	Date
Clinical Studies	Friday, May 5, 2023, 1:00 PM-2:00 PM (ET)	View Recording	View Slides
Multiple Myeloma Precursor Conditions, With Updates	Wednesday, April 5, 2023, 2:30 PM-3:30 PM (ET)	View Recording	View Slides
BCMA-Targeted Bispecific Antibodies in Multiple Myeloma	Tuesday, March 21, 2023, 4:00 PM-5:00 PM (ET)	View Recording	View Slides
Management of Patients Who Have Relapsed After One to Three Prior Lines of Therapy, With Updates	Wednesday, March 8, 2023, 1:00 PM-2:00 PM (ET)	View Recording	View Transcript View Slides
Focus on Treatments, Monitoring, and Maintenance for Newly Diagnosed Multiple Myeloma Patients, With Updates	Friday, February 17, 2023, 12:00 PM-1:00 PM (ET)	View Recording	View Slides
From Diagnosis to Prognosis: Understanding Multiple Myeloma (A Guide for Newly Diagnosed Patients), With Updates	Tuesday, January 24, 2023, 4:00 PM-5:00 PM (ET)	View Recording	View Slides
Treatment Options for Patients Who Have Relapsed After Three or More Lines of Therapy, With an Update on Bispecific Antibodies	Friday, December 2, 2022, 1:00 PM-2:00 PM (ET)	View Recording	View Slides
Multiple Myeloma Precursor Conditions	Wednesday, August 17, 2022, 1:00 PM–2:00 PM (ET)	View Recording	View Slides
Management of Patients Who Have Relapsed After One to Three Prior Lines of Therapy	Wednesday, July 13, 2022, 2:00 PM–3:00 PM (ET)	View Recording	View Transcript View Slides
Focus on Treatments, Monitoring, and Maintenance for Newly Diagnosed Multiple Myeloma Patients	Thursday, June 9, 2022, 2:00-3:00PM	View Recording	View Transcript & Slides

Test	Indication	Values Indicating a More Favorable Prognosis
Beta 2-microglobulin (β2-microglobulin or β2-M)	Higher levels reflect more extensive disease and poor kidney function.	<3.5 mg/mL
Albumin level	Higher levels may indicate better prognosis.	≥3.5 g/dL
Lactate dehydrogenase (LDH) level	Higher levels indicate more extensive disease.	Age ≤60yrs.: 100-190 U/L Age >60yrs.: 110-210 U/L
Freelite® serum free light chain assay	Abnormal results may indicate poor prognosis (also indicates risk of progression of MGUS or asymptomatic myeloma to symptomatic myeloma).	Free light chain ratio MGUS: 0.26-1.65 Asymptomatic myeloma: 0.125-8.0 Symptomatic myeloma: 0.03-32
Chromosome analysis (cytogenetic testing by either karyotyping or FISH)	Presence of specific abnormalities may indicate poor prognosis.	Absence of abnormalities
Gene expression profiling	Presence of specific group of genes can predict low or high risk of early relapse.	Personalize risk score

Kathy Giusti, Founder and Executive Chairman of the Multiple Myeloma Research Foundation, To Address U.S. Senate Committee in Favor of Increased Access to Patient Health Data to Advance Scientific Research

Kathy Giusti, Founder and Executive Chairman of the Multiple Myeloma Research Foundation, To Address U.S. Senate Committee in Favor of Increased Access to Patient Health Data to Advance Scientific Research

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Rocio Scavino

Adrian Rosenkranz

Anne Quinn Young, MPH - Chief Marketing and Development Officer

Lori Tauber Marcus

Mike Mortimer

Paul Giusti

Kathy Giusti

Sarah Coulter

Erin Mensching

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Steve Varley - Vice President, Development

Laura Gilman - Vice President of Events

Karen Dietz, JD, MBA - Chief Administrative Officer and General Counsel

Kenneth Anderson, MD

Rob Miani - Chief Financial Officer

Steven Labkoff, MD, FACP, FACMI - Chief Data Officer

Hearn Jay Cho, MD, PhD - Chief Medical Officer

Randi S.

Evelyn H.

Tricia C.

Lisa B.

Ethan H.

Casey Joe W.

Annamarie K.

Carmen P.

Andrew G.

Jessie D.

Jeffery G.

Daniel Auclair, PhD – Chief Scientific Officer

Michael Andreini – President and Chief Executive Officer

Paul Giusti – President, Riverwoods Holdings, LLC

Kathy Giusti – Founder and Chief Mission Officer

Laugh for Life: New York

POSTPONED

Nicole Sandilands

David R. Parkinson, MD

Grace Allison

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Steven Shak, MD

Rodger Riney

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Laugh for Life: New York

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William S. McKiernan

Laugh for Life:
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Laugh for Life:
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