The Desmoid Tumor Research Foundation

Special Announcement: DTRF Co-Founder Marlene Portnoy Transitions To Board Of Directors

Foundation News

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It is with full hearts that we share with you today that Marlene Portnoy, the DTRF’s Co-Founder and Executive Director, will be transitioning her role within the Foundation.

In February, Marlene will become a major gifts officer and board member where she will continue to support the financial health and future of the Foundation. The role of Executive Director will pass to her co-leader and partner in this journey, the DTRF’s Co-Founder and President, Jeanne Whiting.

After 16 years of tireless work that has helped the DTRF transform the landscape for desmoid tumor patients and their families, Marlene will begin a new and exciting chapter in her life. This change in roles will allow her to spend more time with her husband and their children and grandchildren, while continuing to support the Foundation.

For so many in our community, Marlene has been the first person to help guide them in the right direction after their diagnosis with a desmoid tumor. She has given reassuring support at our annual events, has been an inspiring example of perseverance and leadership, and has formed lasting bonds with patients and families. Her work with the patient and medical communities has accelerated the fight to better understand this disease.

From the bottom of our hearts, we thank Marlene for all she has given to the mission of the DTRF, and for her family’s constant support. We are grateful to have her continue in her new role as we advance desmoid tumor research together.


To learn more about the history of the DTRF, read Our Story.

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*Update: Watch Jeanne Whiting, DTRF Co-Founder, accept the Global Genes Champions of Hope “RARE Champion in Advocacy” Award (beginning at time code 52:42).*

We’re thrilled to share that the DTRF has been honored with the Global Genes Champions of Hope “RARE Champion in Advocacy (Foundation)” award!

Through the RARE Champions of Hope Awards, Global Genes honors and recognizes “true champions for rare disease.” At the awards ceremony on November 18th, Global Genes recognized leaders who have made a significant impact in advocacy, industry, medical care, science, as well as up-and-coming rare disease leaders.

We were honored to be in the company of our fellow nominees and we deeply appreciate this significant recognition from Global Genes.

Our work would not be possible without the support of our incredible desmoid tumor community! THANK YOU!

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*Update: Watch DTRF Co-Founders accept the Abby S. Meyers Leadership award on behalf of the Foundation at NORD’s 2021 Rare Impact Award Ceremony (beginning at 55:45)

We are honored to announce that the DTRF and its Co-Founders Jeanne Whiting and Marlene Portnoy will be the recipients of the 2021 Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders (NORD)! 

The DTRF is being recognized for its exceptional work benefiting the rare disease community. Jeanne and Marlene are grateful to NORD for this honor, which would not be possible without our supportive community and donors. 

Read the press release.

Marlene and Jeanne will accept this award at the Rare Impact Awards at *7pm ET on Monday, June 28th*. Celebrate by joining us virtually for this special ceremony!

The Rare Impact Awards are part of NORD’s annual “Living Rare, Living Stronger” Patient & Family Virtual Forum from June 26-27. This is an annual patient-focused conference, providing patients and families with practical tools for living their best lives with rare diseases. For more information about attending the conference and award ceremony, please visit https://rarediseases.org/living-rare-forum/.