Rare Awareness Radio

Sunitha Malepati—a caregiver, lawyer, and former Georgetown Law professor—serves as Vice President of the CACNA1A Foundation and is the founder & CEO of Buffalo Initiative. In a recent episode of Rare Awareness Radio, she shared her journey in rare disease advocacy, beginning with her daughter's diagnosis of a CACNA1A-related disorder and evolving into a broader mission to accelerate the development of treatments for rare pediatric brain disorders.

Congratulations to the CDKL5 in Color Team! You can listen to their podcasts on Spotify https://lnkd.in/gkdtWPX9.

Available now at: https://lnkd.in/gr6em5Mr Thanks to Sunitha Malepati, CACNA1A Foundation, The Buffalo Initiative, OMSLIFE FOUNDATION, Principled Research Resources, L3C, and of course our host, Richard Juknavorian of Meeting You Where You're At Join us for a compelling episode of Rare Awareness Radio as we welcome Sunita Malipadi — attorney, advocate, and mother — who shares her powerful journey through the rare disease world. 🌿 Sunita's daughter was born with a mutation on the CACNA1A gene, leading to developmental challenges and a two-and-a-half-year diagnostic odyssey. Instead of giving up, Sunita turned her family’s experience into action. She joined the CACNA1A Foundation as vice president and founded the Buffalo Initiative, leading the charge in patient-driven rare disease research. For more information, please visit www.cacna1a.org/ In this episode, Sunita talks about: 🔹 The emotional rollercoaster of their diagnostic journey. 🔹 Why patient-led advocacy is essential for driving innovation. 🔹 The mission of the Buffalo Initiative to tackle the 'valley of death' in genetic medicine. 🔹 Her hopes for a more equitable and accessible research ecosystem. 💙 Follow us for more inspiring stories from the world of rare disease advocacy. #RareAwarenessRadio #RareDisease #GeneticMedicine #CACNA1A #PatientAdvocacy #BuffaloInitiative #HealthcareInnovation

Well done Laura Hattersley! For those who haven't listened, please check out The Kicking CASK Podcast on Spotify and YouTube.

Available now at: https://lnkd.in/gr6em5Mr Thanks to Yiwei She, The TNPO2 Foundation, OMSLIFE FOUNDATION, Principled Research Resources, L3C, and of course our host, Richard Juknavorian of Meeting You Where You're At In this powerful episode of Rare Awareness Radio, we sit down with Yiwei She, founder of the TNPO2 Foundation, to discuss her inspiring journey from mathematician and AI professional to rare disease advocate. When her son, Leo, was diagnosed with an ultra-rare genetic condition, Yiwei refused to accept the lack of treatment options. Instead, she launched a foundation dedicated to advancing precision medicine and improving early genetic diagnoses for children with rare diseases.

OMAS Caregiver, Chanin Zaragoza, shares her son Zeke's inspiring story. To learn more about OMAS, please visit https://lnkd.in/guidPYg7 (the official website for OMSLIFE FOUNDATION)

https://lnkd.in/gr6em5Mr Thanks to Chanin Zaragoza, Mike Michaelis, OMSLIFE FOUNDATION, Rare Awareness Radio, and of course our host, Richard Juknavorian of Meeting You Where You're At Diagnosed with OMS at just 36 months, Zeke Zaragoza endured a challenging four-year period marked by aggressive, painful therapies, physical, and occupational treatments. By the age of seven, he achieved remission and had remastered the motor functions lost abruptly as a toddler.

Not just today, but every day, we can honor Dr. King by doing the right thing and continuing his fight for justice and equality. As he said, "The time is always right to do what is right."

So grateful to have Richard Juknavorian as the host of our podcast and happy for him to share his expertise with others in this new role!

Adam Clatworthy shares with Rare Awareness Radio his journey that led to the creation of The CRELD1 Warriors Foundation.