by Christine | Jul 18, 2024 | Blog, News, Podcast
Daniel DeFabio turned his personal tragedy into a mission to support others. After losing his son Lucas to Menkes syndrome at just 11 years old, Daniel dedicated himself to the rare disease community, now serving as the Director of Community Engagement for Global...
by Christine | Jul 11, 2024 | Blog, News, Podcast
“Dear God, I just want to live…” was the last journal entry made by 18-year-old Olivia Allen. The Saratoga Springs teen was diagnosed with Acute Myeloid Leukemia (AML), a rare form of cancer, and passed away within the same year – shocking her...
by Christine | Jul 4, 2024 | Blog, News, Podcast
In this episode, we sit down with Heather to discuss the devastating murder of Philip Rabadi in 2022. Philip’s father, Shaw Rabadi, discovered his son’s brutally tortured body, marking the beginning of an intense investigation that revealed a chilling tale...
by Christine | Jun 27, 2024 | Blog, News, Podcast
Heather Straughter and Jessica Fein share personal experiences of grief, loss, and resilience in the face of rare diseases and uncertainties. They emphasize the importance of acknowledging and processing emotions, sharing personal stories, and advocating for support...
by Christine | Jun 20, 2024 | Blog, News, Podcast
Kayla shares their journey as special needs parents, detailing how they support and love Jax through his struggles. She also discusses a pivotal moment when a doctor administered the wrong dose of a vaccine to Jax, highlighting the importance of advocating for your...
by Christine | Jun 13, 2024 | Blog, News, Podcast
Father and son, Shaun and Shamus Evans have inspired the nation with their running achievements. From a 3,200 mile run across America when Shamus was nine, to the prestigious Boston Marathon now that Shamus is 18. Shamus was born with Cerebral Palsy – a condition...
