SEF is now part of NIH/NCI Study!
We have some very exciting and positive news in our fight to find better treatments for SEF. We have formalized a relationship with the National Institute of Health and the National Cancer Institute (NIH/NCI) to study SEF in their Natural History Study. Also, the Rucker Collier Foundation is now a part of their MyPART network as an advocacy partner for SEF.
Through this partnership we now have gained a powerful ally in our fight. The Natural History Study will collect information and tissue samples from SEF patients and their relatives and track their health histories in order to learn more about how these rare tumors develop and progress. The purpose of the study is to provide expertise in both the clinical and scientific fronts to help find better treatments for SEF.
The My Pediatric and Adult Rare Tumor (MyPART) Network is a group of patients, family members, researchers, advocates, and healthcare providers who are working together to find treatments for childhood, teen, and young adult rare solid tumors. MyPART believes that working together will help accelerate the discovery of treatments for rare cancer.
“Advocacy groups are a critical bridge between patients and researchers, helping share experiences and expertise between these important stakeholders. Non-profit organizations dedicated to improving the experiences and outcomes of people with rare solid tumors are important members of the MyPART network.”
- National Institute of Health, National Cancer Institute
MyPART formally partners with patient advocacy organizations to facilitate the exchange of information between patients, healthcare providers, and researchers. So, as the newest partner of the MyPart network, the Rucker Collier Foundation and the NIH/NCI will work together to share information about SEF and help patients find clinical trials and experts to treat their disease, hopefully expediting the fight to find successful treatments.
We are very proud that our advocacy for Rucker has shined a light in an otherwise dark place. When Rucker was first diagnosed there was no dedicated scientific work being done for SEF. In contrast, today there are two programs devoted to studying the disease: the SEF Pilot Study we have started at cc-TDI, and now the Natural History Study at the NIH. Both are now collaborating and working hard to find better treatments for SEF. We are proud to say neither of these SEF studies would be happening without Rucker providing the inspiration.
In the case of the NIH, our relationship with Dr. Mary Frances Wedekind Malone was instrumental in their decision to take on SEF in their Natural History Study. She was someone we called upon multiple times as we faced daunting decisions, and she helped us navigate Rucker’s treatment options. She also serves as a member of our Medical Advisory Board at the Rucker Collier Foundation. She is committed to leading the way towards finding a cure for SEF through her position at the NIH/NCI and with our foundation. We thank her and her colleagues for their support.
We are in awe of the fact that our son Rucker has inspired the support of this powerful organization to help others that face this horrible disease. In other words, we have been successful at inspiring the Federal Government to use its resources to help us achieve our mission of making SEF universally survivable!
For more information about the NIH Natural History Study and how to become a part of it, please see more information here.