19-year-old Emily Duke was having an amazing time at Auburn University, where she studied hard and spent her spare time as acting Vice President of Alpha Omicron Pi sorority. She…
The Binder family never expected that their 12-year-old twins, Grady and Jace, would be diagnosed with a rare genetic disorder. In fact, this particular disorder is so rare that it…
Unfortunately, Jody McPherson, 47, a veteran firefighter with the Mesquite Fire Department, passed away after his battle with Creutzfeldt-Jakob disease (CJD). As reported by Selena Hernandez of CBS News Texas,…
Ask any doctor about neuroblastoma and they'll tell you: this rare cancer, which forms from immature nerve cells, predominantly affects children who are five years old or younger. So when…
In June 2023, Michael, a 35-year-old man from Houston, started feeling ill and achy. By June 19, his symptoms had worsened significantly. Both Michael and his family believed that he…
At five years old, Traviana Dunston has cultivated a deep love and appreciation for music and dance. She’s an entertainer at heart: full of energy and light. Right now, Traviana…
Marco and India Biviano felt like something bad was happening to their young son Luca. His stomach was distended and painful. Luca frequently developed chest infections that required round after…
13-year-old Kaydence Bryant has always had a big personality. This easygoing teen is an honor roll student, loves playing Pokemon and Skyrim, and plays trumpet in the school band.…
Nobody expects to hear that their child, especially their baby, has cancer. But that is just what Chris and Carney Miller were faced with in 2023. The Miller family…
Unfortunately, there are a number of negative or false societal narratives around the concept of “rare disease” or “disability,” particularly when it comes to what these individuals can achieve. Having…
3-year-old Ava Bolton has always been bright, vivacious, and gregarious. So her parents Natalie and Scott were understandably worried when, near her third birthday, Ava's affect seemed to change. According…
In 2021, Josie Gosney entered the world and her parents couldn’t be more thrilled. When she was first born, Josie showed signs that something might be right. But after a…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
Eight years: that’s how long it has been since Moxie Garrison was diagnosed with Marfan syndrome. Now nine years old, the spunky and resilient third grader approaches every challenge head-on.…
Together, Sarah Hutchesson-Webb and her fiancé Jake Powell have built a beautiful life together. They welcomed sons Hunter (5) and Aston (2) into the world—and wanted to round out their…
When Eric and Samantha Rovinetti learned that they were pregnant with their first child, they were overjoyed. They could not wait to welcome baby Adrianna into the world. But shortly…
Friends and family refer to 41-year-old Teddy Higgins as kind, selfless, and loving. Given all of his support for others, his friends and family are now working to support Teddy…
When Leonidas Boyne was born, he seemed—for all intents and purposes—to be a healthy, happy child. At five months old, he is still a bubbly, happy baby with a smile…
When Charlotte Harris was born, she seemed - for all intents and purposes - to be a healthy infant. But her mother Melissa became concerned about a potential health issue…
On January 7th, the Jacksonville Jaguars and Tennessee Titans faced off on the football field. With just 2:51 left in the game, Josh Allen returned a fumble for a touchdown,…
After Tabitha Wright heard the news from the doctor, her heart dropped. Her daughter Aspen had just been diagnosed with spinal muscular atrophy (SMA) type 1, a rare genetic…
Over thirteen years ago, Josh McGuigan met his wife Stephanie – and the rest was history. In the time since, the couple has gotten married and created a beautiful life…
If you ask college basketball fans in Tennessee, they’ve probably heard of Zakai Zeigler. The 5’9 point guard, who originally hails from Long Island, now dominates the court as a…
Branson Figueroa is four years old – and he’s tough. He has to be; after being born with craniosynostosis, Branson has had to undergo skull reconstruction surgeries twice already. According…
Laura Brown never planned on running more than one marathon. In 2012, she tackled a marathon as a way to cross an item off of her bucket list. But since…
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