Marlene Portnoy co-founded DTRF because of the frustration she experienced with the lack of information available and the lack of research on this rare disease. Her husband, Steve, was diagnosed in August 2004 with a retroperitoneal desmoid and has since been treated with surgery and radiation.
After graduating magna cum laude from Albany State University in 1981, Marlene pursued a career in sales, which she started at Corning Glass Works from 1982-1985 in Chicago, Illinois. She then moved to New York and worked for Playskool Toys, a division of Hasbro Toys, first as a sales representative and then as a District Sales Manager for the Middle Atlantic territory from 1986-1993. She then took time out to raise her two young children and became active in community service which has included activities such as running various social action programs, participating in the local soup kitchen, and working on golf outings and walk-a-thons for local community interests.
Marlene enjoys such active pursuits as running, hiking, biking and skiing. She has a passion for travel and experiencing other cultures. Marlene’s big bucket list items are finding a cure for desmoid tumors and going to Mt. Everest!
She resides in Hoboken, New Jersey, with her husband Steve. Marlene has two beautiful daughters, Brittany and Danielle, two wonderful sons-in-law, Adam and Mike, and adorable twin grandsons, Grant and Mason. All take an active interest in the Foundation.
In 2005, Jeanne Whiting and Marlene Portnoy founded The Desmoid Tumor Research Foundation to facilitate and fund desmoid tumor research and support patients with access to information. Jeanne’s personal journey with a retroperitoneal desmoid tumor involved resection, recurrence, 2 1/2 years of two different chemotherapies and eventual loss of her right kidney. She is keenly aware of the needs of the desmoid community, and is dedicated to accelerating the search for a cure.
Prior to co-founding DTRF, Jeanne spent most of her career as an attorney. After attending University of Michigan Law School and J. Reuben Clark Law School, she received a Juris Doctor degree, magna cum laude, in 1980. She then clerked for the Michigan Court of Appeals in Detroit, Michigan, and in succeeding years practiced with Sidley & Austin in Cairo, Egypt and in Washington, D.C.; with Shearman & Sterling in New York, New York; with Stern, Dubrow & Marcus in Maplewood, NJ; and, as a sole practitioner.
After retiring from the practice of law to raise her family, Jeanne became involved in various nonprofit organizations, including serving as Northeast Director for Choice Humanitarian (1997-1998) and Executive Director of FamilyCares (2000). She feels that getting a desmoid tumor was both a wake-up call and a calling to a new endeavor as it became clear to her as a patient that this was a field that needed jumpstarting into a new level of accelerated research to develop new treatments.
Jeanne resides in Salt Lake City, Utah with her husband Steve. They raised four sons and a daughter, and now enjoy their seven beautiful grandchildren.
Lynne’s life officially began on January 1, 2010 at 12:01am, just after she shot the starting gun for her first race. Since then, she has consulted on/timed/directed over 50 running events for local nonprofits. She initially learned about desmoids through running buddy, Sera Snyder, who was diagnosed with the disease and founded Running for Answers 5K in 2010. Lynne has been directing the 5K since 2002.
Although Lynne’s work experience spans many sectors/ industries (federal gov’t, retail, dotcom, large nonprofit, small nonprofit, small business), they pale in comparison to the depth and satisfaction she receives through her work with DTRF.
Lynne lives in Philadelphia, PA, the home of DTRF’s Annual Patient Meeting and RFA 5K.
Dr. Maneesh Kumar joined the DTRF team in March 2021. He has over a decade of experience in research and medicine, several publications, and many presentations. His publications are on average cited twice as often as other researchers and includes a comprehensive review of oxidative stress in human health with over 200 citations.
Following his postdoctoral training, Dr. Kumar decided to use his passion and experience to make a difference in human health through non-profit work. He is currently the owner and principal consultant of Optimized Scientific Solutions, LLC. Dr. Kumar has a passion for collaborations, bringing together non-profit, researchers, and pharma to advance research and ultimately cures. He is excited to bring that passion and his experiences to DTRF.
Dr. Mrinal Gounder is the Scientific Director of DTRF and a member of the Medical and Scientific Advisory Boards. He is an Associate Professor of Medicine at MSKCC specializing in sarcomas and developing new drugs in cancer. He is an internationally recognized leader in desmoid tumors and leads clinical trials in desmoid tumors. He recently showed for the first time that sorafenib is an active drug in desmoid tumors. He completed his fellowship in medical oncology at MSKCC. Prior to arriving at MSKCC, he completed his internal medicine training at Northwestern University in Chicago and received his MD from SUNY- Syracuse.
Ms. Lucas has over 12 years of clinical research experience primarily in the early phase development of assets, including large and small molecules, across various therapeutic areas. Her career began with a small, start-up biopharmaceutical company as the lead in-house CRA with Eyetech Pharmaceuticals in NYC. Most notably, she was part of a small clinical team responsible for data collection and on-time database closure of a pivotal Phase 2/3 trial to enable fast-tracked FDA approval. She was part of the initial team, working with Regeneron Pharmaceuticals, in the start-up of an international Phase 1/2 program as Medical Program Coordinator III. A year later, she was recruited into Amgen’s Early Development Department as a Clinical Research Study Manager in Thousand Oaks, CA. At Amgen, she worked primarily with early phase oncology programs as well as a type 2 Diabetes Mellitus molecule. During her time at Amgen, was the CRSM for two international, acquisition and Co-Sponsor programs as well as multiple oncology Phase 1 and Phase 2 studies. She was responsible for maintaining communication across a highly matrixed environment including more than one sponsor, cross-functional teams, as well as oversight of Investigator and Site activities. Ms. Lucas is also involved with the Desmoid Tumor Research Foundation (DTRF) as an advocate as well as a volunteer collaborator in the first international, natural history study and Desmoid Tumor patient registry which is in collaboration with the National Organization for Rare Disorders (NORD). She joined RRD International LLC as a Clinical Project Manager in December of 2020. In this role, she supports the overall and daily clinical operations activities on behalf of RRD’s partners for clinical trials. She has a passion to serve patients with serious or unmet medical need by helping to make potential therapies and treatments accessible to them. Ms. Lucas is graduate of Clemson University with a BS in Biological Sciences and was chosen in 2008 to participate in the Alta Bates Oncology Preceptorship in Berkeley CA.
Amanda Hoffman is the owner of ADH Communications (formerly Motus Video Design), offering full-service communications consulting to help organizations trying to make the world a better place turn their target audience into advocates and activists for their cause. For over six years, Amanda worked as a communications and marketing consultant for the IT consulting firm, Booz Allen Hamilton, supporting multiple federal government clients. She left the firm in 2014 to pursue her entrepreneurial passion full time. In 2015, she joined the National Environmental Education Foundation (NEEF) as their Communications Manager, but her passion for helping multiple causes she was passionate about lead her to eventually return to her consulting business. Originally from Boston, she graduated from American University in Washington, DC, with a BA in Journalism. Amanda is also a published author, editor and avid supporter of the arts, having danced competitively through her teens. She continued dancing in college, but at the age of 21, she was diagnosed with a desmoid tumor in her calf muscle. Since then, she has been through multiple treatments, including surgery and three chemotherapies, but still lives with the disease. She found DTRF in 2009 while searching for information on her rare condition and, eager to do what she could to help find a cure, volunteered her professional skills to the Foundation. Amanda was the Marketing Chair for the inaugural DTRF Running for Answers 5K and has served on the committee in a marketing and outreach consulting capacity each year since. Her current business was born out of her love for the work she was doing for DTRF. Since its launch in 2013, Amanda’s business has been an official sponsor for the Running for Answers 5K, filming and editing promotional videos for the event and DTRF. Outside of video production, Amanda advises the Foundation on PR, marketing, and social media management. She is honored to work with the wonderful and dedicated team at DTRF.
To learn more about her company, please visit her Facebook business page: https://www.facebook.com/
Wendy has a background of forty years of accounting experience since becoming a Certified Public Accountant in 1982. She is a member of the American Institute of Certified Public Accountants and is currently licensed to practice in New York, New Jersey and Connecticut. Wendy oversees the DTRF accounting process, including the preparation of the foundation tax return and other financial reporting.
Wendy currently has her own tax practice which consists predominately of individuals, trusts and small corporations throughout the United States, with most clients located in the New York metropolitan area. Prior to starting her own practice, she was a tax manager for Cornick, Garber & Sandler, LLP, a mid-sized accounting firm in New York City, New York from 1980 through 1991. Wendy earned her BS degree in accounting from the State University of New York at Albany in 1980. She was very active in community affairs while living in River Vale, NJ for 25 years. She has co-chaired many local school fundraisers throughout the years. She currently lives in Milford, CT with her husband, Stephen Carbery. She has two children, Shannon (married to another Danny!) & Dan, both living and working independently.
Steve has been a volunteer with DTRF since its inception in 2005. He is responsible for providing support to desmoid tumor patients and guiding them through their desmoid journey. Steve was first diagnosed with a desmoid tumor in 2004 when there was little information and no treatment protocols available. He sincerely wants to make sure that nobody else experiences the fear of the unknown as he did when first diagnosed.
Steve is the CEO and Co-Founder of Mediamax Network a media and marketing company that specializes in providing targeted local market solutions for national, regional, and local brands. Prior to founding Mediamax Network he was a VP/Publisher with Conde Nast Publications.
Steve graduated from the University of Albany in 1980 with a BS in Accounting and went on to become a CPA prior to jumping into the media world.
Steve also happens to be married to Marlene Portnoy, one of the co-founders of DTRF, and is the inspiration for her involvement in the Foundation.
Philip Grand, DTRF technical advisor and webmaster, is a software industry veteran with over 25 years of experience developing software for the computer, telecommunications and pharmaceutical industries. He has a B.S. from Northwestern University and a M.S. from the University of Southern California in Computer Science.
Philip has designed and developed applications supporting the eCommerce, Financial, Manufacturing and Research areas of several Fortune 500 companies. He has also created various digital photo slide shows incorperating music and special effects.