DTRF Staff & Volunteers

When we find a cure for Desmoid Tumors - and we will - it will be because of many people working together.

Marlene Portnoy

Co-founder and Executive Director, The Desmoid Tumor Research Foundation 

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 Marlene Portnoyretroperitoneal 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 walkathons for local community interests.

She resides in Suffern, New York with her husband, Steve, and two daughters Brittany and Danielle.

Jeanne Whiting

President and Co-founder, The Desmoid Tumor Research Foundation 

In 2005, Jeanne Whiting The Desmoid Tumor Research Foundation with Marlene Portnoy 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 jeanneShearman & 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 New Canaan, Connecticut with her husband Steve. They are the parents of four sons and a daughter.

Lynne Hernandez

Director of Special Events & Operations, The Desmoid Tumor Research Foundationlynne bw

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 and/ or timed over 50 running events for local nonprofits. She has directed 2 full/ half marathons on behalf of First Descents (www.firstdescents.org) and 2015 is her 4th year directing Running for Answers 5K. She initially learned about desmoids through running buddy, Sera Snyder, who was diagnosed with the disease and founded Running for Answers 5K in 2010.

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.

Wendy L. Kaufman

Certified Public Accountant, The Desmoid Tumor Research Foundation

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.

Dr. Mrinal Gounder

Scientific Director
The Desmoid Tumor Research Foundation
Mrinal Gounder

Dr. Mrinal Gounder is the Scientific Director of DTRF.  He is an assistant professor at MSKCC specializing in sarcomas and developing new drugs in cancer. He has a special clinical and research interest in desmoid tumors and 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

Media/ Marketing Advisor
The Desmoid Tumor Research FoundationAH

Amanda Hoffman is the founder and owner of Motus Video Design, a video marketing production and consulting company helping nonprofits, small businesses and startups produce affordable, impactful online marketing videos. 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. Originally from Boston, she graduated from American University with a BA in Journalism and continues to live and work in Washington, DC. Amanda is also a published author, editor and avid supporter of the arts, having danced competitively through her teens. At the age of 21, Amanda 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, thankful for its mission and community, 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 company, Motus Video Design, was born out of the work she was doing for DTRF. Since its launch in 2013, Motus has been an official sponsor for the Running for Answers 5K, filming and editing promotional videos for the event and DTRF. Outside of video marketing, Amanda advises the Foundation on PR, marketing and social media outreach. She is honored to work with the wonderful and dedicated team at DTRF. To learn more about her company, please visit: www.motusvideodesign.com.

Philip Grand

Technical Advisor and Webmaster
The Desmoid Tumor Research 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 schultzB.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.

He currently owns and operates P Grand Technology LLC and works for Barenecessities.com. Philip resides in Hillsborough, New Jersey with his wife, and two daughters.



Jill Grand

Published Research Advisor
The Desmoid Tumor Research Foundationjill grand bw

Jill Grand, RPh is DTRF's Published Research Advisor. She is a licensed Pharmacist in NJ and Ct and has over 30 years experience in community pharmacy. She graduated Magna Cum Laude from the University of Connecticut School of Pharmacy in 1981. She resides in Hillsborough, NJ with her husband Philip and has two daughters.


Amy Carse

Graphic Designer

Many thanks to Amy Carse who has devoted countless hours to designing DTRF graphic design materials.

Amy is a Connecticut native who attended Paier College of Art in Hamden, Connecticut. She graduated with amyhonors as a Graphic Design major and won various awards while at Paier. Since graduating, she has expanded her portfolio to include not only graphic design, but web design as well.

Her experience is extensive, and includes working with creative agencies as well as a national catalog publisher. Her present role is that of a graphics and web designer for a fast-growing, advertising sales company.

Amy's combination of creativity, customer-focus and attention to detail are evident in all of her work. She currently lives with her husband and two children in Clinton, Connecticut.