Uplifting Athletes Support the Rare Disease Community

What does the NFL Draft, WWE star Joe Spivak (aka Tank Ledger), and HHT research have in common? Before Feb 2024, nothing! Allow me to explain this improbable connection and introduce you to another rare disease advocacy organization called Uplifting Athletes.   Uplifting Athletes ‘harnesses the power of sport to invest in the lives of people impacted by rare disease so everyone has hope for the future’. They allow both professional and student athletes to use their platform to advocate for rare disease patients and fundraise to support advancements in research. Athletes can organize weightlifting competitions within their teams (Lift for Life), raise money on a point-scored basis when they play, and importantly, they provide experiences for people with rare diseases and their families to attend games or hang out with athletes from their favorite teams. In return, these athletes gain leadership experience, service opportunities, and are allowed to use their passion for sport to make real changes in the lives of rare disease families.   Through various events and pledges, the money raised from athletes goes to several initiatives like providing travel awards to researchers to attend rare disease patient conferences – we all know the patient voice is the expert voice in rare disease. Researchers meeting patients and hearing firsthand how to orient their research goals to the most urgent patient priorities is paramount. Uplifting Athletes also partners with patient advocacy organizations to give research funding to young investigators who are often finishing their training and looking to transition to their own independent research laboratories.   That was a lot of background to bring us back to the NFL and WWE. Joe Spivak was an Uplifting Athletes chapter leader during his time playing football at Northwestern University. His time raising money for rare disease research was very productive with tens of thousands of dollars raised, but he said the most meaningful part of his participation in Uplifting Athletes was meeting rare disease patients, hearing their incredible stories, and knowing the people he was trying to help. Joe told us all this as he emceed the 2024 Young Investigator’s Draft at Lincoln Financial Field where the Philadelphia Eagles call home. In this annual event, Uplifting Athletes awards the rare disease researchers with grant funding and welcomes them into the draft with all the pomp and circumstance you could imagine. They want to celebrate researchers like we celebrate athletes, and they pulled out all the stops. The event mimicked the NFL draft to the T with a time clock, the signature jingle indicating a draft pick is in, the draft analyst, all the stats, and an incredible series of photos of the athletes in their custom jerseys indicating their name and draft class.   Cure HHT’s draft pick was Dr. Anthony Anzell. The Uplifting Athletes scientific advisory board carefully reviewed applications and grant proposals from all researchers and we were very pleased when Dr. Anzell was selected to represent HHT and receive funding to support his work. Dr. Anzell is an HHT patient himself and after receiving his doctorate, he began studying HHT as a postdoctoral scholar.  Anthony was diagnosed at age 15 after multiple trips to the emergency room with horrible migraines. It took a courageous and bold mother to advocate for her son and finally he received scans that showed his brain was covered in abscess, his liver was also infected, and he had many pulmonary AVMs. After three brain surgeries, a liver surgery, and embolization of all the vessel malformations in his lungs, Anthony squeaked out alive. I wouldn’t say he was unphased because he healed and began doing crazy endurance events like ultra marathons, ironman races, and incredibly long swims all in the name of HHT awareness. Now, in addition to running for awareness, he is chasing a cure for HHT through research.   It was an absolute pleasure to attend the Draft with Cure HHT executive director Marianne Clancy and celebrate with Anthony and his wife Emily. The team at Uplifting Athletes, led by Rob Long, did a phenomenal job orchestrating a seamless event complete with stadium tours, delicious food, the Draft presentation, and most importantly, the opportunity to meet other rare disease researchers and families. The hope in the room was palpable and the pump up it gave everyone was amazing! Tank Ledger said he felt like he could run through a table he was so excited and the sentiment was echoed by many others.   We cannot wait to see what this collaboration brings, and we are incredibly excited for Dr. Anzell and his continued success in HHT research.  *Main image depicts two rare disease patients who have both turned into researchers in their own disease space trying to find a cure for themselves and countless others. Left is Dr. Anthony Anzell and right is Dr. David Fajgenbaum.   David Fajgenbaum is the author of Chasing my Cure and the founder of the Castleman Disease Network Collaborative, an organization dedicated to advancing research to cure Castleman Disease which almost killed him a decade ago. In addition, David has founded Every Cure – an organization with the intent to harness AI to link currently approved FDA drugs to rare disease indications. While David was dying from Multicentric Idiopathic Castleman Disease, he began experimenting on his own blood cells in the laboratory and tried different drugs to save his life through systematic experimentation. He has been in remission for ten years now by finding an FDA-approved drug to prevent organ transplant rejection that also worked for his disease.