Behind the Mystery

Our hearts are heavy as we say goodbye to a beloved member of our Behind the Mystery community, Savannah Salazar. ?? Savannah passed away last Wednesday due to SUDEP (Sudden Unexpected Death in Epilepsy), a devastating reality for those living with epilepsy. Savannah’s journey, alongside her incredible mother, Dr. Tracy Dixon-Salazar, was one of resilience, love, and advocacy. She was deeply cherished by her father and brother and adored by the rare disease community for her bubbly personality. Through Behind the Mystery, they shared their story to bring awareness to Lennox-Gastaut Syndrome (LGS) and the urgent need for research and support. Her light, bravery, and unwavering spirit touched so many lives, and her legacy will continue to inspire. Our thoughts are with Tracy and all who loved Savannah. To honor her memory, please join us in watching our beautiful episodes and reading our blog about sweet Savannah and her mother at TheBalancingAct.com/rare. ?? A Mother’s Journey: https://lnkd.in/e4KHzRj8 ?? LGS Foundation: https://lnkd.in/eVDM9mDA ?? Rare Disease Day 2022: https://lnkd.in/eDinXdnp ?? Tracy’s Advocacy: https://lnkd.in/ecud5qUC Rest in peace, Savannah. The Behind the Mystery team will deeply miss you and will continue to fight this fight, in honor of you. #BehindTheMystery #LGS #SUDEP #EpilepsyAwareness

Inclusion means considering everybody—including those with disabilities and health conditions that may limit certain abilities. Every decision should be made with accessibility and equity in mind. The rare disease community stands with our friends with Down syndrome on #WorldDownSyndromeDay and celebrates the need for a world that values representation, opportunity, and belonging for all. ???? ?? ?? credit: @coordown #BehindTheMystery #RepresentationMatters #WDSD #InclusionMatters #DownSyndromeAwareness #RareDiseaseAwareness

?? Important Update: Recent mass firings at the U.S. Department of Education have led to the termination of at least 243 staffers from the Office for Civil Rights (OCR), resulting in the closure of seven out of twelve regional branches. OCR plays a crucial role in ensuring accessibility, testing accommodations, and fair disciplinary actions. Advocates warn these cuts leave families with few options to protect their children’s rights. With reduced enforcement, rare disease, and special needs families may face even greater challenges in securing support in schools. Stay informed, share your experiences, and keep advocating for the rights of children with disabilities. ?? ?? ?? #BehindTheMystery #RareDisease #DisabilityRights #RareDiseaseNews #RareDiseaseAdvocacy #InclusionMatters #AdvocateForChange

21-year-old Sebastien Beauzile from Long Island has become the first New Yorker cured of sickle cell disease thanks to Lyfgenia, a groundbreaking gene therapy that replaces defective genes with healthy ones. After enduring years of pain and hospitalizations since infancy, Beauzile is now living pain-free. He can finally enjoy activities he once thought impossible, like working out and planning vacations. This breakthrough brings hope to the rare disease community. The success of Lyfgenia paves the way for curative treatments for other rare genetic disorders. It also highlights the advancements in gene therapy, encouraging further research and innovation. Most importantly, it offers patients the chance for a better quality of life, free from the debilitating symptoms of their conditions. A new era of treatment is here! ?? #BehindTheMystery #SickleCell #SickleCellAnemia #SickleCellAwareness #GeneTherapy #RareDisease #RareDiseaseAwareness

Behind the Mystery? is the first and only television series exclusively dedicated to raising global awareness about rare and genetic diseases, revealed through unfiltered and inspiring journeys of patients and their families. Each compelling episode uncovers the profound personal journeys of those affected, exposing both their unimaginable struggles and their remarkable triumphs. These intimate narratives not only reveal the medical complexities but also amplify the resilience, strength, and courage of the human spirit in the face of adversity. #BehindTheMystery #RareDisease #RareDiseaseAwareness

Céline Dion shares how living with Stiff Person Syndrome, a rare autoimmune neurological disorder, has changed her life while also giving her a new perspective. Her journey has become a powerful platform to raise awareness, advocate for rare conditions, and inspire support for those facing similar challenges. Sending Céline strength and love as she continues to navigate her rare disease diagnosis. ?? ?? credit: @cbcnews #BehindTheMystery #CelineDion #StiffPersonSyndromeAwarenessDay #SPSAwareness

From searching for answers for their own families to 12 years and over 100 episodes later, Carri Levy and Molly Mager—co-founders and the driving force behind Behind the Mystery—share their journey from creation to where they are today. What started as co-workers turned into co-founders on a mission to make a lasting impact in the rare disease community, helping individuals get diagnosed and access critical resources. ?? ??: Believe Limited Watch the full interview at https://lnkd.in/g2g2235 #BehindTheMystery #RareDiseaseAwareness #WomenInRare #RareDisease #CreatorStory

Many congratulations to Laura McKeever for receiving the 2024 U.S. Excellence Award at Alexion Pharmaceuticals, Inc. ??

Every diagnosis journey is unique, with different challenges and steps along the way. ?? Share your story—what do you wish you had known? What advice would you give to those navigating their own path to a diagnosis? #BehindTheMystery #DiagnosisJourney #RareDisease #RareDiseaseJourney #RareDiseaseAwareness

#AutoimmuneAwarenessMonth ??? Did you know there are over 100 autoimmune diseases, many of which are rare? Women make up 80% of autoimmune disease patients, with some conditions affecting certain age groups more than others. What autoimmune disease or rare autoimmune disease(s) do you advocate for? This month, let’s work together to: ?? Raise awareness and understanding of autoimmune diseases ?? Promote early diagnosis and treatment ?? Advocate for research and better support for patients #BehindTheMystery #AutoimmuneAwarenessMonth #AutoimmuneAwareness #RareDisease #ChronicIllness #InvisibleIllness #AdvocateForChange