As a co-founder of The Desmoid Tumor Research Foundation, it is with very poignant emotions that I announce my upcoming retirement at the end of 2023. This foundation has been a life’s work of passion and purpose for me.
When I was diagnosed with a retroperitoneal desmoid tumor over 20 years ago, there were no established treatment protocols, few existing treatments which were only sporadically effective, and very little research on these tumors. Under those circumstances, dealing with this rare disease was a terrifying prospect that led me and my co-founder, Marlene Portnoy, to start DTRF with goals to fund research and support patients and doctors with information.
How positively moving and inspirational it is to know that this year we have the SpringWorks drug nirogacestat under final review for approval at the FDA. The prospect of having the first drug approved for this rare disease is a milestone worthy of cheers and celebration! It is a breakthrough that we could only have dreamed of when we started the DTRF!
We continue to support additional clinical trials of innovative systemic medical treatments and localized treatments. The recognition of desmoid tumors as an important focus of research was made clear as desmoid tumors were highlighted as “Sarcoma of the Year” at the 2022 Connective Tissue Oncology Society conference. Awareness was also expanded when the DTRF was honored with two prestigious awards for leadership and advocacy in 2021 by the National Organization of Rare Disorders (NORD) and Global Genes.
I am thrilled with all of the milestones we’ve achieved to date as we have advanced research and expanded education and support for patients and medical professionals. Breakthroughs have included: the DTRF’s annual International Research Workshops and Patient Meetings, the Global Consensus Paper and Virtual Tumor Board that help doctors and patients around the world, the development of publicly available desmoid cell lines and other models for research, the Patient Reported Outcomes (PRO) tool, the Patient Registry and Natural History Study, the approval of new ICD-10-CM diagnosis codes specific to desmoid tumors, and others too numerous to name.
I extend deep appreciation to our DTRF staff and Board of Directors, and all who have helped DTRF in our almost two decades of work. Our Medical and Scientific Advisory Boards are supportive at every turn. Industry colleagues have collaborated with us in bringing about new clinical trials toward new treatments. And donors and fundraisers have helped us fund over $5,000,000 in research grants through the years.
After more than 18 years with the DTRF, I will be moving to emeritus status as of Nov 1, and retiring at the end of 2023, passing the Executive Director title and baton to Lynne Hernandez. I am excited for Lynne, who has worked with the Foundation for almost a decade as our Operations Director. I know she will capably carry the baton as Executive Director with great enthusiasm, boosted by her love for patients. The future of the DTRF is extremely bright, and the possibilities for better outcomes for our patients have never been greater.
Retirement will be the end of a very fulfilling era for me, but only the beginning of accelerated progress for the DTRF as we continue the undaunted quest for a cure for each and every desmoid tumor patient.
With deep gratitude to all, and unwavering hope for the future,
Executive Director and Co-founder
The Desmoid Tumor Research Foundation