Joey’s Wings is a non-profit organization with the mission to find a cure for rare aggressive kidney cancers that affect children and young adults, including translocation renal cell carcinoma. Joey’s Wings was founded in 2014 in memory of Joey Xu, an energetic, smart, and fun-loving boy from Gainesville, Florida who was diagnosed with translocation renal cell carcinoma in 2013. After learning that no standard of care treatments existed for translocation renal cell carcinoma, Joey’s family and oncologists advocated to get access to other existing treatments for Joey’s cancer. After Joey passed away in 2014, Joey’s Wings was formed in his memory to continue to advocate for children and young adults with cancer.
Joey’s Wings raises awareness and supports kidney cancer research to find a cure. Joey’s Wings’ hallmark awareness campaign, “Cranes for a Cure,” inspired by Joey’s love of origami, provides origami crane strings and mobiles to pediatric cancer patients as a symbol of hope. In honor of Childhood Cancer Awareness Month in September, Joey’s Wings coordinates the installation of 2,000 paper cranes in venues across the country to raise awareness and give tribute to the thousands of lives lost to childhood cancer. Joey’s Wings also provides support to childhood cancer patients and families, including online tutoring programs and assistance with travel, food, and other expenses related to medical appointments.
In their mission to find a cure for translocation renal cell carcinoma, Joey’s Wings facilitates a patient registry and tissue bank and partners with MD Anderson Cancer Center in an effort to sequence translocation renal cell carcinoma tumors. Joey’s Wings also offers programs to support early and mid-career investigators studying translocation renal cell carcinoma. Joey’s Wings is co-sponsoring the upcoming Translocation Renal Cell Carcinoma Symposium, also co-sponsored by MyPART, which will be held in Cincinnati, OH on September 21-22. The symposium will be chaired by Dr. James Geller from Cincinnati Children’s Hospital Medical Center, along with Drs. Marston Linehan and Ramaprasad Srinivasan from the Urologic Oncology Branch in NCI’s Center for Cancer Research. MyPART is excited to partner with Joey’s Wings to advance our mission of improving the lives of people with rare tumors.
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The Chordoma Foundation hosted its International Chordoma Research Workshop in Boston, MA June 14-15th. The workshop began with introductory remarks from Chordoma Foundation Executive Director and chordoma survivor, Josh Sommer. Josh charged workshop attendees with asking questions and connecting, highlighting collaboration as the fuel for progress. After Josh’s remarks, young adult chordoma survivor, Dani Pike, shared her journey with chordoma and navigating new challenges because of her diagnosis. Aimed towards an audience of clinicians and researchers, the workshop provided an opportunity to hear from top surgeons, radiation oncologists, medical oncologists, and basic researchers about the current state of the art of treating chordoma and potential opportunities for finding new therapies.
The second day of the research workshop began with another spotlight on the patient perspective from Todd Balf and continued with a focus on current clinical trials for chordoma. MyPART physician Dr. Mary Frances Wedekind provided an overview of the Natural History Study of Rare Solid Tumors and data gathered from the chordoma cohort, which just enrolled its 100th participant. During the evening poster session, MyPART physician Dr. Liny John presented a detailed description of the chordoma cohort including demographic information and genetic alterations found. MyPART team members, Drs. Brigitte Widemann, Karlyne Reilly, Margarita Raygada, and Christina Vivelo also attended the workshop and met with colleagues across the chordoma research community.
After the International Chordoma Research Workshop concluded on Friday July 14th, the International Chordoma Community Conference kicked off to welcome patients and families in the same venue. The day began with chordoma survivor and author, Susie Caldwell Rinehart. Shannon Lozinsky, Chordoma Foundation’s Director of Patient Services, then outlined the foundation’s survivorship initiative, which includes several new support services for patients and families, including peer guides and virtual support groups. The Chordoma Foundation website is also home to “Chordoma Connections,” a platform enabling patients and families to create profiles and connect with others located nearby. Patients can also share details about their care team to the “Specialist Directory,” a resource for anyone looking for specialists in chordoma-related side effects — a complement to the foundation’s Doctor Directory. Shannon also previewed the Chordoma Connections mobile app, which will be coming soon. Stay tuned!
Finally, Drs. Mary Frances Wedekind and Liny John again provided an overview of the Natural History Study of Rare Solid Tumors, specifically the chordoma cohort, and how patients and families can participate if interested. Importantly, Drs. Wedekind and John each spent time explaining why it’s fundamental to work with patients and advocates in research to ensure research priorities align with patient needs. The Chordoma Foundation has been vital in referring patients and families to the MyPART program and facilitating MyPART’s research on chordoma. We look forward to the next research workshop and community conference!
 Left: Drs. Liny John and Mary Frances Wedekind present at the International Chordoma Community Conference. Top Right: Drs. Mary Frances Wedekind, Margarita Raygada, and Brigitte Widemann at the International Chordoma Research Workshop. Bottom Right: Dr. Wedekind catches up with colleagues Jim Palma (TargetCancer Foundation) and Josh Sommer (Chordoma Foundation).
MyPART scientist Dr. Francesco Tomassoni Ardori gave a talk entitled, “Modelling Rare ‘Wild-type’ Gastrointestinal Stromal Tumors (GISTs)” at the recent Animal Models of Cancer Conference held in Lisbon, Portugal on July 18th-21st. Gastrointestinal stromal tumor, or GIST, is a type of digestive system tumor occurring in about 6,000 people per year. “Wild-type” GIST refers to a rare subset of GIST, making up only about 5-7% of all GIST, that does not harbor the common genetic mutations often found in GIST. Instead, “wild-type” GISTs have mutations in the gene SDH, and are also called SDH-deficient GIST. MyPART is studying SDH-deficient GIST through the creation of models and the Natural History Study of Rare Solid Tumors. Dr. Ardori has made significant progress in establishing a mouse model of SDH-deficient GIST, which is an important step in being able to test potential treatments for this tumor. This is also important work for the field of rare tumors, for which research models are often lacking. MyPART co-leader Dr. Karlyne Reilly also attended the conference. She reflected, “We had a wonderful conference and learned a lot about the latest techniques in mouse modeling, as well as advances in immunology, metabolism, and cancer stem cell biology across cancers (including several rare cancers).”
Learn more about MyPART research here.
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September is Childhood Cancer Awareness Month.
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September is Thyroid Cancer Awareness Month. MyPART partners with ThyCa: Thyroid Cancer Survivors’ Association, Inc., an advocacy organization supporting patients with thyroid cancer. MyPART also studies anaplastic thyroid cancer and medullary thyroid cancer through the Natural History Study of Rare Solid Tumors. Learn more here.
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September is Desmoid Tumor Awareness Month. MyPART partners with the Desmoid Tumor Research Foundation (DTRF) and studies desmoid tumors through the Natural History Study of Rare Solid Tumors. Learn more here. DTRF is hosting their annual International Desmoid Tumor Research Workshop in Philadelphia, PA on Friday Sep 22nd. Learn more and register for the meeting here.
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Sep 20-22: NIH Pediatric and Wild-Type GIST Clinic. MyPART partners with the Life Raft Group to hold the NIH Pediatric and Wild-Type GIST Clinic at the NIH Clinical Center in Bethesda, MD. The clinic brings patients and families together with expert clinicians and researchers. To learn more about the upcoming clinic, please email BJ Thomas, RN at barbara.thomas2@nih.gov.
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Sep 21-22: Symposium on TFE/Translocation Renal Cell Carcinoma, Cincinnati, OH. In partnership with Joey’s Wings, MyPART is co-sponsoring the TFE/Translocation Renal Cell Carcinoma Symposium, chaired by Dr. James Geller from Cincinnati Children’s Hospital Medical Center, along with Drs. Marston Linehan and Ramaprasad Srinivasan from the Urologic Oncology Branch in NCI’s Center for Cancer Research. For more information, please contact Dr. Geller at Geller@cchmc.org or register for the symposium here.
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Oct 15-17: NORD Breakthrough Summit. The National Organization for Rare Disorders (NORD) will hold its annual Breakthrough Summit in Washington, DC. MyPART team members will attend. Learn more and register here.
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