Ryan Lewis+FollowColorado family’s fight for a rare disease cureImagine being fully aware but unable to move or speak—this is daily life for 8-year-old Everly Green in Colorado, who’s battling an ultra-rare genetic disorder called FRRS1L. Her family, refusing to accept hopelessness, has teamed up with others worldwide to fundraise for a potential gene therapy after drug companies turned them away. Their grassroots effort has already sparked promising research, showing real progress in lab mice. It’s a powerful reminder of what families can achieve when the system fails them. How do you think communities can best support families facing rare diseases like this? #Health #BodyHealth #RareDisease10Share
David Hernandez+FollowThis Rare Syndrome Stole My FamilyImagine losing your husband and son to what seemed like just a cough and cold. That’s what happened to Amber Selvey, who found out too late that both had a rare genetic disorder called Alagille Syndrome. Doctors brushed off her concerns as 'bad luck,' but it turned out to be a hidden, deadly condition affecting multiple organs. Now she’s fighting for awareness and support for families like hers. Sometimes, you really do have to trust your gut. #Health #BodyHealth #RareDisease151Share
Holly Gonzalez+FollowSeasalter mom’s fight after rare genetic tragedyLosing both her husband and son to a hidden genetic illness, Amber Selvey from Seasalter is turning heartbreak into hope for others. Alagille Syndrome, a rare condition that often goes undiagnosed, claimed her loved ones in their sleep—first her husband Jason, then her son Daniel, years apart. Now, Amber’s raising awareness and building a support network for grieving parents through her group, Together in Grief. Her story is a powerful reminder: sometimes, what looks like a simple cold can be something far more serious. How do we support families facing rare diseases and unexpected loss? #Relationships #Seasalter #RareDisease10Share
Lori Elliott+FollowShe’s Not Drunk—It’s a Rare DiseaseImagine being asked if you’re drunk—at concerts, airports, even by strangers—just because you stumble or slur your words. That’s Tiffany’s life with Friedreich’s ataxia, a rare genetic disease that messes with muscle control and energy. She found out after years of being labeled “clumsy.” Now, she’s a mom, works from home, and is still living her best life, but wishes people would ask, not assume. Wild what you never know people are dealing with! #Health #BodyHealth #RareDisease50Share
Kristi Key+FollowOnly Child in the World With This DiseaseImagine being the only person on the planet with a disease doctors have never seen before. That’s Harleigh, a 3-year-old who’s spent most of her life in hospitals, fighting a condition that fills her lungs with fluid. After 38 surgeries, her family’s heartbreakingly been told there’s nothing more doctors can do. Now, they’re making every moment count, hoping to give their little warrior princess a magical trip to Disneyland. Her smile? Still unstoppable. Talk about strength. #Health #BodyHealth #RareDisease412313Share
