The Desmoid Tumor Research Foundation

Desmoid Tumor Awareness Month 2023 Comes To A Close

Community

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Today is the final day of Desmoid Tumor Awareness Month 2023!

Over the last month, we have shared stories from #DesmoidWarriors around the globe at different stages in their journeys with different perspectives on managing life with these rare tumors. Thank you to all of the patients who submitted their stories, and to all who shared them across social media. You have helped raise #DesmoidAwareness!

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

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

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 X @dtrfoundation and Instagram @dtrfoundation, and by signing up for our emails.

Thank you for making a difference this September!

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The annual DTRF Together We Will Weekend is September 22-24! We hope you’re already making plans to be there with us in Philadelphia, but just in case you need a little convincing, here are the top 5 reasons to attend!

1. To connect.

Patients often say that the moment they first met another desmoid tumor patient in person is the moment they stopped feeling alone.

When you attend the annual DTRF Together We Will Weekend, you will meet other desmoid tumor patients (perhaps for the very first time), connect more deeply with those you already know, and/or be the veteran patient that shares your experience and wisdom with someone newly diagnosed. Whatever your circumstances, these personal connections are invaluable and can make this journey a little easier.

This is the largest annual gathering of desmoid tumor patients in the world. Be a part of this foundational weekend!

2. To be part of something bigger.

Every attendee arrives with one significant thing in common: first-hand, personal experience with desmoid tumors. So, even if you come by yourself and you’re not an extrovert, it’s easy to connect with others quickly and naturally build your community of support.

Stickers colored to represent the location of your tumors are available to add to your name tag, making it simple to find others with a similar experience. The DTRF Together We Will Weekend is a warm and welcoming space for all affected by this rare disease and the perfect place to get to know your community!

This year, fostering collaboration between our patients/caregivers and our desmoid tumor experts is a top priority, because we all have the same goal of working together to improve outcomes and eventually find a cure for desmoid tumors. It will take every facet of our community to reach that goal, so let’s connect, collaborate and learn from each other!

3. To empower yourself.

Being your own best advocate means staying abreast of the latest advancements in desmoid tumor research and treatments.

The experts attending the DTRF Together We Will Weekend present on new research, promising medical therapies, upcoming clinical trials, and brand new therapeutic options, often months, sometimes years, before they become widely known in the field. Desmoid tumor research is advancing every single year and therefore no annual event is alike.

Gain the knowledge you need to ask the right questions, become aware of cutting-edge research to share with your physicians back home, and make informed future treatment decisions.

4. To learn and share.

Our distinguished speakers are leaders in the field of desmoid tumors and their presentations aim to deliver the most updated information on research, potential treatments and ways to help our community find answers.

Cryoablation, HIFU, Nexavar, nirogacestat (SpringWorks Therapeutics’ gamma-secretase inhibitor), and AL102 (Ayala Pharmaceuticals’ gamma-secretase inhibitor) were all presented at DTRF Patient Meetings months, in some cases years, before becoming widely known in the field.

One of the best ways a patient can ensure proper treatment is by staying up to date on the research and advancements in the field. Patients often feel more confident making difficult treatment decisions when they can also consider what is on the horizon.

During DTRF Together We Will Weekend, the learning flows both ways. The weekend is structured as an ongoing conversation between experts and patients, an information exchange that benefits our entire community. This is your chance to ask some of the top physicians and researchers your questions in person and share your unique desmoid tumor experience.

5. To celebrate our community, raise awareness and have fun at the RFA 5K Run & Walk!

Now that we are meeting in person again (finally), our annual weekend will culminate with the RFA 5K Run & Walk. Don’t let the name fool you, we welcome ALL types of participation. Our accessible course in beautiful Fairmount Park, Philadelphia provides the perfect backdrop for a day of fun and celebration. Even some of our medical and industry partners are bringing teams this year! Yes, the kids’ Fun Run will be back too! Click here to register for RFA.

Can I still fundraise?

Absolutely! Just like the “virtual” years after Covid, you have the option to create a personal fundraiser to encourage giving. Click here to register for RFA, share your challenge with your friends and family, and join our RFA Champions Chat on Facebook to connect with other Champions who are fundraising virtually. The RFA awards ceremony on 9/24 will be live streamed from Philadelphia–virtual fundraisers are included!

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Today is the final day of Desmoid Tumor Awareness Month 2022!

Over the last month, we have shared stories from #DesmoidSurvivors around the globe at different stages in their journeys with different perspectives on managing life with these rare tumors. Thank you to all of the patients who submitted their stories, and to all who shared them across social media. You have helped raise #DesmoidAwareness!

To mark the end of this year’s campaign, please enjoy this musical montage of the many faces of our community. If you are living with this disease, please know you are not alone in this fight. We encourage you to explore our Patient & Caregiver Resources.

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

  •  “One Desmoid Tumor Patient’s Journey” with Jackie Kucskar  |  WATCH
  • “5 Mental Health Tools for Desmoid Patients” with Licensed Clinical Social Worker and Desmoid Patient Ashley Williams  |  WATCH
  • “Getting the Most Out of your Consultation and Treatment Plan” with Dr. Candace Haddox from Dana-Farber Cancer Institute  |  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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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!