Marist

Kaci Adams isn’t a doctor, but sometimes she has to feel like one. The married 43-year-old mother of three has the rare disease Klippel-Feil Syndrome (KFS).   Klippel-Feil Syndrome is an extremely complex disease with many potential symptoms and disease paths. Finding a medical specialist or expert to advise and help with her rare struggle has […] Continue Reading »

Spend more than five minutes with Marni Cartelli and there is no possible way to miss her passion. She proudly wears it on her sleeve. What drives her passion is a will and commitment to battle a difficult and complex rare disease that makes a day without pain nearly impossible. Marni was diagnosed with Complex […] Continue Reading »

The loss of hope and that feeling nobody is listening when you are screaming out for help came roaring back for Marni. It was a road she had been down before when she was originally diagnosed in 2016, and didn’t think it was a bridge she would have to cross again. “That anger and frustration […] Continue Reading »

Spend more than five minutes with Marni Cartelli and there is no possible way to miss her passion. She proudly wears it on her sleeve. What drives her passion is a will and commitment to battle a difficult and complex rare disease that makes a day without pain nearly impossible. Marni was diagnosed with Complex […] Continue Reading »

Justin Hopkin wears a lot of different hats. Doctor, father, husband, and rare disease advocate just to name a few. But, to Justin, no matter what hat he’s wearing, they all kind of look the same. That’s because Justin is committed to helping and serving others first. At the top of that list is his […] Continue Reading »

As the Special Projects Director at the Amyloidosis Foundation Kathi Luis is invested in the rare disease patients, families and caregivers that her nonprofit serves. She is a dedicated and committed advocate for the Rare Disease Community. The Amyloidosis Foundation, like most single rare disease patient focused organizations, is powered by a small staff. Kathi […] Continue Reading »

Nearly 30 million Americans are living with a rare disease and  COVID-19 continues to present a myriad of challenges that is not only impacting the patients but their families and caregivers as well. At the top of the list is reduced access to vital medical care which, in turn, has exacerbated already existing challenges. Among […] Continue Reading »

Uplifting Athletes is proud to announce the inaugural 7,000 Mile Challenge – a 10-day event starting July 17th that will bring focus and attention to the more than 7,000 known rare diseases. People affected by a rare disease are fighting against a finite clock that didn’t stop because of COVID-19. We’re letting the Rare Disease […] Continue Reading »

COVID-19 has led to many adjustments of the college athletic schedule. The football student-athletes and programs Uplifting Athletes work with face a condensed time frame to prepare for the upcoming season under heightened safety precautions. In order to avoid any additional pressure, Uplifting Athletes made the decision to cancel all our annual Lift For Life […] Continue Reading »

When NC State tight end Thomas Ruocchio headed to Philadelphia for his first Uplifting Athletes Leadership Development Conference in 2017, he was anticipating a weekend of business and logistics meetings. Four years later, the outgoing NC State Chapter President appreciates the weekend of connecting with other college football student-athletes bound together by the rare disease […] Continue Reading »