Full Breakdown
Community Fundraising Efforts for Rare Genetic Disorders
9/3/2025, 1:15:11 PM
Labor Day Fundraiser for PFIC Network
In Wolfe County, Kentucky, the local community gathered for the third annual Labor Day Fundraiser Party, benefiting the PFIC Network, an organization dedicated to supporting families affected by Progressive Familial Intrahepatic Cholestasis (PFIC), a rare genetic liver disorder. Emily Ventura, the executive director of the PFIC Network, shared her personal connection to the cause, stating that her daughter was diagnosed with PFIC at five months old. Ventura emphasized the importance of community support, noting, “To have their support throughout her journey... it’s life-changing.” The event featured a disc golf tournament, cornhole competition, and an evening filled with food and music, showcasing the community's commitment to raising awareness and funds for PFIC.
Fundraising Trek in Cambodia
In Preston, England, Rad Tingle, a kitchen manager at Ribble Court Care Home, is preparing for a 10-day trek across Cambodia to raise £3,500 for Lancashire Teaching Hospitals' renal unit, which has provided him with care for Von Hippel-Lindau (VHL) syndrome. Tingle, who has undergone a kidney transplant, expressed excitement about the trek, stating, “We can’t wait to see the sights... while raising money for such a life-changing cause.” His dedication to fundraising has included various adrenaline-fueled events, earning him recognition as a finalist for Charity Fundraiser of the Year at the Best of Lancashire Awards 2023.
Family Fundraising for Terminally Ill Child
In Christchurch, the family of three-year-old Teraysa Sprason is raising funds to support her treatment for late infantile Battens disease (CLN2), a rare genetic condition with no cure. Teraysa's parents, Michael and Stacey, are seeking financial assistance to cover travel expenses to Great Ormond Street Hospital, where she will receive enzyme replacement therapy. Stacey described the emotional toll of the diagnosis, stating, “It didn’t register in my mind that doctors were saying Teraysa was going to die.” A GoFundMe page has been established to alleviate the financial burden on the family during this challenging time.
Benefit for Toddler with Heart Condition
In Milan, Indiana, a benefit event titled "Hunting For Hudson" is set to take place to support the Coombs family, whose one-year-old son, Hudson, has been diagnosed with complex congenital heart disease. The event, organized by the Dustin Rump Big Buck Contest, aims to raise funds to help the family manage ongoing medical expenses and travel to Cincinnati Children’s Hospital. The fundraiser will feature raffles, live auctions, and food, with all proceeds directed to the Coombs family.
Urgent Surgery for Baby with Rare Eye Condition
Petru and Natalia Obada from Banbury, Oxfordshire, are urgently fundraising for eyelid surgery for their nine-month-old daughter, Sophia, who has been diagnosed with Blepharophimosis Ptosis Epicanthus Inversus Syndrome (BPES). Without surgery, Sophia risks permanent blindness. The family has launched a GoFundMe campaign to cover medical costs, travel, and accommodation for the procedure in Spain. Petru shared the urgency of their situation, stating, “We’re sure about this... we’re dedicated to go there.” The campaign has already raised £8,000, but the family hopes to secure additional funds to ensure Sophia receives the necessary treatment.
Conclusion
These fundraising efforts highlight the resilience of families facing rare genetic disorders and the vital role community support plays in their journeys. From local events to international treks, individuals are coming together to raise awareness and funds for those in need, demonstrating the power of collective action in the face of adversity.
