2023 REFLECTIONS FROM JEANNE WHITING Retiring Executive Director and the DTRF’s Co-Founder
As a co-founder of The Desmoid Tumor Research Foundation, it is with very poignant emotions that I announce my retirement at the end of 2023. This foundation has been a life’s work of passion and purpose for me. I’d like to take this occasion to reflect on DTRF’s journey and accomplishments over the past 18 years. When I was diagnosed with a retroperitoneal desmoid tumor over 20 years ago, there were no established treatment protocols, few existing treatments that 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 in 2005 with the goals of funding research and supporting patients and doctors with information. How positively moving and inspirational it is to know that this year, in 2023, we obtained FDA approval of Ogsiveo (nirogacestat) for the treatment of adults with progressing desmoid tumors. 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’ve seen great progress in awareness as well. 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 to reflect the patient’s voice in clinical trials, 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 and researchers have collaborated with us in bringing about new clinical trials toward new treatments. 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 moved to emeritus status as of Nov 1, 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. A heartfelt dedication to the people of the desmoid tumor community is felt in every interaction with Lynne. We can think of no better person to be at the helm for the exciting things to come. 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,
Jeanne Whiting Co-founder and Executive Director Emeritus
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