In 2010, Lynne Hernandez learned about desmoid tumors through a friend and running buddy who was diagnosed with the disease and founded RFA, DTRF’s largest in-person fundraiser. Lynne began volunteering for RFA to support her friend. (At the time, Lynne had never heard of “rare disease”, and had no idea how life-changing and empowering the fundraising experience was for her friend.)

In 2014, after directing RFA for a few years, Lynne began working full-time for DTRF, supporting co-founders Marlene Portnoy and Jeanne Whiting. In late 2023, when Jeanne Whiting retired as Executive Director, Lynne stepped into the role.

Lynne’s work experience spans many sectors and industries including federal government, retail, dotcom, large nonprofit, small nonprofit, and small business. While she has acquired extensive skills from these experiences, they pale in comparison to the depth and satisfaction she receives through her work with the DTRF.

Lynne lives in Philadelphia, PA, the best city in the U.S. She loves to travel, but always returns home with a full heart. 

Marlene Portnoy co-founded the DTRF after her husband, Steve, was diagnosed in 2004 with a retroperitoneal desmoid tumor. While he was treated with surgery and radiation, Marlene experienced frustration with the lack of information available and the lack of research on this rare disease. This kickstarted her goal of accelerating research and the search for a cure.

After graduating magna cum laude from Albany State University in 1981, Marlene pursued a career in sales, first working at Corning Glass Works and then at Playskool Toys, a division of Hasbro Toys, where she served as a sales representative and later as a District Sales Manager. Afterwards, Marlene took time to raise her two young children, during which she also became active in community service, with 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 resides in Tuxedo, NY, with her husband, Steve. She enjoys spending time with her family, which includes two beautiful daughters, Brittany and Danielle, two wonderful sons-in-law, Adam and Mike, and three adorable grandsons, Grant, Mason, and Brooks. Marlene also enjoys such active pursuits such as running, hiking, biking, and skiing. She has a passion for traveling and experiencing other cultures. 

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, two and a half years of two different chemotherapies, and eventual loss of her right kidney. This has made her keenly aware of the needs of the desmoid community and dedicated to accelerating the search for a cure.

Prior to co-founding the 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, 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 and Executive Director of FamilyCares. She views her experience with a desmoid tumor as both a wake-up call and a calling to a new endeavor since 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 have raised four sons and a daughter, and now enjoy their twelve beautiful grandchildren. They love the outdoors and enjoy skiing and crew rowing together.