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 September of 2005, Jeanne Whiting co-founded 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 an intra-abdominal desmoid tumor involved resection, recurrence, then 2 1/2 years of two different chemotherapies. She is keenly aware of the needs of the desmoid community, and is motivated to Jeanne Whitingaccelerate the search for a cure.

Ms. Whiting 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 clerked for the Michigan Court of Appeals in Detroit, Michigan (1980-81), and in succeeding years practiced with Sidley & Austin in Cairo, Egypt (1981-82) and in Washington, D.C. (1983); with Shearman & Sterling in New York, New York (1983-1986); with Stern, Dubrow & Marcus, Maplewood, NJ (1986-1989); and as a sole practitioner (1989-1994)

Since her retirement from the practice of law in 1994, Ms. Whiting has been involved in various nonprofit and community organizations as she has raised her family. She was Northeast Director for Choice Humanitarian, 1997-1998, which organizes humanitarian expeditions taking professionals and lay people into Asia, Africa, and Latin America. She served as Executive Director of FamilyCares (in 2000), an online resource whose mission is to promote the development of compassion and the spirit of charity in children through hands-on family projects that help others in need in the local and global communities. After Ms. Whiting’s year with FamilyCares, the organization, along with its sister organization Kids Care Clubs, were taken over by the Points of Light Foundation where they continue to be an integral part of their national outreach.

Ms. Whiting 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 2014 is her 3rd year directing Running for Answers. She initially learned about the event through running buddy, Sera Snyder, who was diagnosed with desmoids and founded the event in 2010.

Although Lynne's work experience spans many sectors/ industries (Federal Gov't, retail, dotcom, large nonprofit, small nonprofit, travel, 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.


Bruce Larson

Director, Individual and Foundation Giving
The Desmoid Tumor Research Foundation

Bruce Larson is responsible for increasing DTRF revenue from individual and private and community foundation donors. Bruce is a Managing Director at Goldman, Sachs & Co which he joined in 1987. Among other roles, Bruce Bruce Larsonhas been head of Asia-Pacific Mergers and Acquisitions (while stationed in Hong Kong) and spent three years providing mergers and acquisitions advisory to clients in Japan. Bruce served for one year as the chief of staff to the CFO of Goldman Sachs before becoming the global head of human resources, which he did for five years (1995-2000). Following his role as head of HR, he became the Chief Operating Officer of the Communications, Media and Entertainment group within the Investment Banking division - a role he played for over two years. During his time at Goldman Sachs Bruce has been a member of a number of the firm's important operating committees, including the Compensation Committee, the Retirement Committee, the Recruiting Committee, the Diversity Committee, the Wellness Advisory group and the IPO team which was involved in taking Goldman Sachs public in 1999. He was also invited by Goldman Sachs to participate in a two day executive seminar at Harvard Business School focused on developing leaders in the non-profit world.

Bruce’s involvement in the non-profit world includes serving for the past seven years on the board of trustees of New York Downtown hospital in New York City. In that capacity he was an active member of the hospital's "turn-around" committee, focused on improving the financial performance of the hospital, and was a member of the Executive Committee of the hospital. Additionally Bruce oversaw the hospital's "Kress Vision Fund", an endowed fund established to provide free eye care screening and treatment in economically challenged areas of New York city. Bruce has held several other leadership positions in other community and non-profit organizations, including the University of Utah College of Humanities advisory board and the University of Utah School of Business New York Advisory board, the Boy Scouts of America and the New Canaan Basketball Association.

Bruce graduated with a B.A. in Finance and Japanese from the University of Utah and with an MBA from the University of Chicago. He resides in Connecticut with his wife, Gayle and their five children


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.



Michelle O'Donnell

Fundraising Chair
The Desmoid Tumor Research Foundation

Michelle Rounds was diagnosed with a desmoid tumor in the mesentery in June 2012. The rarity of the disease, fear of recurrence, and overall lack of accessible knowledge regarding this disease led her path to The Desmoid Tumor Research Foundation (DTRF). Two months Michelle Roundspost surgery Michelle has turned from patient to advocate in an effort to raise funds and awareness for DTRF.

Michelle graduated magna cum laude from the State University of New York at New Paltz  in 1993 where she earned a BS in Business Administration with a concentration in Finance. She then moved to New York City and began a successful career as an I.T. recruiter until 2011. As a result of her diagnosis and experience with desmoids, Michelle has decided to devote time and energy to helping others by getting involved in fundraising.

Michelle resides in Nyack, NY with her partner Rosie and their four children.


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.