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. 2019 was Lynne’s 8th year directing Running for Answers (RFA) 5K.
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. 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.
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 twenty-six 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 and New Jersey. Wendy oversees the DTRF accounting process, which includes the account receivables, banking, account payables, preparation of the foundation tax return and all official financial reporting. She also coordinates the annual audit process for the foundation, working with an independent accounting firm.
Wendy currently has her own tax practice which consists predominately of individuals 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 has been very active in local community affairs since moving to River Vale, 17 years ago. She has co-chaired many local school fundraisers throughout the years.
She currently lives in River Vale, New Jersey, with her husband, Stephen Carbery and their two children, Shannon and Dan.
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.