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
