Behind the Mystery

The joy on his face says it all. 💙 After five months of dedication, this incredible family transformed their home to make it fully accessible for their son, Harry, who lives with #SMAType1. Accessibility is often one of the many hurdles individuals with rare diseases face, and creating spaces that empower independence takes time, care, and determination. This moment of inclusion and adaptation is a powerful reminder of what love and persistence can build. Thank you for sharing your journey with us, @high.hopes.for.xn--haribos-gh05f #BehindTheMystery #RareDiseaseAwareness #AccessibilityMatters #SMAAwareness #AdaptedLiving #Inclusion

We’re taking you behind the scenes at Shriners Children's Chicago, where we teamed up with patient Vivian and the incredible staff at Shriners to transform their teen lounge into something truly special. Catch this heartwarming makeover and Vivian’s inspiring story on Behind the Mystery Gives Back, airing April 30th at 7:30 AM EST on Lifetime. You won’t want to miss it! #BehindTheMystery #BehindTheMysteryGivesBack #ShrinersHospitals #ShinersChicago #ShrinersChildrens

Today, on FOP Awareness Day, we honor the strength, resilience, and advocacy of Carli— a powerful voice in the rare disease community. 💙 Diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) at just 5 and a half years old, Carli vividly remembers the day her life changed, and the challenges she knew lay ahead. But rather than letting FOP define her, she chose to use her voice to raise awareness, educate others, and connect with families facing similar journeys. 🎥 Watch Carli's powerful story and learn more about FOP: https://lnkd.in/e4gB23Sc #BehindTheMystery #FOPAwarenessDay #FOPAwareness #RareDisease #FibrodysplasiaOssificansProgressiva

Come behind the scenes with us at Global Furniture Group, where we got an inside look at their innovative products designed to support healthcare environments. Global creates furniture that connects people and spaces—bringing functionality, comfort, and a sense of community to every design. We’re excited to see how Global's furniture helped transform a collaborative space for patients at Shriners Children's Chicago. Stay tuned for the upcoming Behind the Mystery episode to see it all come together! Learn More about the amazing care at Shriners Children's Chicago. Visit shrinerschicago.org #BehindTheMystery #GlobalFurnitureGroup #BehindTheMysteryGivesBack #ShrinersHospitals

Today on The Balancing Act, we honored the beautiful life and legacy of Savannah Salazar, a radiant light through her courageous journey with Lennox-Gastaut Syndrome (LGS). Savannah's mother, Tracy Dixon-Salazar has joined us on Behind the Mystery many times, sharing Savannah’s story— connecting with other LGS families, while passionately advocating for greater awareness and research. Through their voices and vulnerability, Savannah and Tracy helped shine a light on the urgent need for understanding, support, and hope within the rare disease community. 💙🦓 To honor Savannah's memory, please join us in watching our beautiful episodes and reading our blog at TheBalancingAct.com/rare. 🎥 Behind the Mystery: Lennox-Gastaut Syndrome (LGS) – A Mom’s Journey to Understanding Her Daughter’s Rare Disease 🎥 Lennox-Gastaut Syndrome Foundation: Working Together to Find a Cure 🎥 Exclusive Interview With NORD for Rare Disease Day 2022 📝 Behind the Mystery Community Member, Dr. Tracy Dixon Salazar’s Journey with LGS Advocacy #BehindTheMystery #LGS #EpilepsyAwareness #LGSawareness #LGSFoundation

Crack open your rare knowledge! 🥚🦓 Discovered a new rare disease? Have one to share? Share this quiz and let’s raise awareness together! 💙 #BehindTheMystery #RareDisease #RareDiseaseAwareness #HappyEaster

Peeking behind the scenes of a special "Behind the Mystery Gives Back" episode! We joined JLL in their stunning downtown Chicago office to explore the fascinating psychology of design, reimagining spaces with accessibility and user experience at the heart. Stay tuned to see how we partnered with JLL Design to reimagine a special area at Shriners Children's Chicago, a transformation filled with purpose and heart. 💙 #BehindTheMystery #JLL #JLLDesign #BehindTheMysteryGivesBack #ShrinersHospitals

When Michelle Werner’s son was diagnosed with Duchenne muscular dystrophy, her world shifted. Like so many rare disease families, she was left navigating a system that felt unprepared and out of reach. As a seasoned pharma executive, Michelle understood the landscape of drug development, but even she was shocked by the lack of options and support for rare disease communities. That’s when her personal mission began. Now, as CEO of Alltrna, she’s working to transform rare disease treatment through innovative tRNA technology, driven by a mother’s urgency and a deep understanding that every day matters. This is the power of lived experience fueling progress for rare disease families everywhere. 💙 Full story at www.pharmavoice.com #BehindTheMystery #RareMama #RareDiseaseStories #DMD #DuchenneMuscularDystrophy

#WorldHealthDay is a powerful reminder that health equity must include everyone, especially those living with rare diseases. With over 300 million people worldwide affected, rare conditions are too often overlooked in public health conversations, resulting in delayed diagnoses, limited treatment options, and widespread misunderstanding. This day offers the rare disease community a global platform to be seen, heard, and prioritized. 💙 Swipe to learn 6 ways rare diseases drive progress in health and medicine. Let’s keep rare diseases at the heart of the health rights conversation—because everyone deserves answers, support, and care. #BehindTheMystery #WorldHealthDay2025 #WorldHealth #HealthEquity #RareDisease #RareDiseaseAwareness

💙 Let’s Meet Another Behind the Mystery Community Member: Jayla! 💙 Jayla loves to dance, play, be a girly girl, enjoy music, and socialize in her own unique way, even though she is nonverbal. Through every challenge, she continues to smile, a true testament to her strength and spirit. Here’s a little more about Jayla and her journey with #RettSyndrome: "As a Rett parent, it is hard to see your child lose skills she once worked so hard to get. It is a constant fear that lingers of not know when Rett is done taking. She battles with Rett symptoms everyday but she has an army behind her who supports, loves, and will forever fight with her. We hope for a cure one day. We are #RETTy!" The hope for a cure remains strong, and raising awareness is a crucial step forward. Though Rett syndrome is rare, exciting advancements are happening in the Rett community. 🧬 🦓 Ready to share your story? Our DMs are open, or fill out our community member form via the link in our bio. We’re excited to meet you! ✨ #BehindTheMystery #RettSyndromeAwareness #RettSyndrome