Join us in Philadelphia from Sept. 25-27th for our "Together We Will" Weekend: - Register today!

The Desmoid Tumor Research Foundation

Registration Is Open For The 2022 Virtual DTRF “Together We Will” Weekend!

Community

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Registration is *NOW OPEN* at DTRF.org/weekend for the 2022 DTRF Together We Will Virtual Weekend (Sept. 23-25), kicking off our summer-long RFA Virtual Challenge virtual fundraiser!

As a reminder, the primary events of our signature September weekend will be held *virtually* once again. However, we also hope to host a special, outdoor, in-person community event at Fairmount Park in Philadelphia on the morning of Sunday, September 25th.

Plan to join your community this fall, and TOGETHER WE WILL…

  • CONNECT patients and care partners from across the globe at our International Virtual Community Networking Event.
  • EMPOWER OURSELVES with information from top physicians and researchers studying and treating desmoid tumors at the signature DTRF Annual Patient Meeting Webinars.
  • FUND A CURE all summer long with the #RFAVirtualChallenge community fundraiser! Go the #Distance4Desmoids and we’ll celebrate with a LIVE virtual ceremony to close the Weekend. Learn more.
  • ADVANCE RESEARCH by hosting some of the brightest researchers and medical professionals from across the globe at the DTRF International Desmoid Tumor Research Workshop. (*Researchers and medical professionals ONLY*)

Stay informed by adding us to your Favorites on Facebook and signing up to receive our emails.

Learn more about the Weekend events.

(#DTRFWeekend2022)

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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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Today is the final day of Desmoid Tumor Awareness Month 2021!

Over the last month, we have shared stories from #DesmoidSurvivors representing six countries and four continents whose ages spanned three to 78 years old. Thank you to all of the patients who bravely submitted their stories, and to all who shared them. You have helped raise #DesmoidAwareness!

If you are living with this disease, please know you are not alone in this fight. We encourage all patients to explore our Patient & Caregiver Resources.

In case you missed them, recordings of our special Desmoid Tumor Awareness Month LIVE stream events are available:

  • “What’s in a Name? ‘Cancer’ and Desmoid Tumors” with Raphael Pollock, MD, PhD, director of The James, The Ohio State University  |  WATCH
  • “One Desmoid Tumor Patient’s Journey” with Christina Kosyla  |  WATCH

You can help raise #DesmoidAwareness year-round by talking about your desmoid tumor journey to family and friends, as well as your physicians, and raising funds for desmoid tumor research around special occasions like birthdays, diagnosis anniversaries, holidays, and more. Start a Facebook fundraiser with one click or learn about other Fundraising options.

Stay up to date with the latest in desmoid tumor-related news from the DTRF by favoriting us on Facebook, following us on Twitter (@dtrfoundation) and Instagram (@dtrfoundation), and by signing up for our emails.

Thank you for making a difference this September!

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Thank you to our global desmoid tumor community of patients, care partners, and medical professionals, who attended and participated in the DTRF Together We Will Virtual Weekend! (#DTRFWeekend2021)

Together we advanced research, connected, empowered ourselves, and fundraised for a cure, while celebrating Desmoid Tumor Awareness Month!

**Thanks to the hard work of our RFA Challengers, and the generosity of other donors and sponsors, we’ve SURPASSED our fundraising goal of $200,000!** Please note that your fundraising pages will stay open for a few months, so we encourage you to keep going! Or, start a Facebook fundraiser with one click. 

  • 2021 DTRF International Desmoid Tumor Research Workshop:  170 dedicated physicians and researchers from ~100 institutions in 30 countries registered for our virtual 8th Annual DTRF International Desmoid Tumor Research Workshop! We’re honored to be able to host this important collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities.

If you couldn’t join us last weekend, here’s how you can access the recorded events:

  • 2021 DTRF Annual Patient Meeting Webinars 1 & 2: The recordings of these educational events (including live Q&A) are available to view on our Patient Meeting page.
  •  2021 DTRF RFA Virtual Challenge Ceremony: This uplifting celebration is available to view on Facebook.

The work continues to find better treatments and, one day, a cure! Once again, on behalf of the DTRF team, THANK YOU!