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RAR Stacked-1

Amplifying voices of those battling rare diseases

Rare Awareness Radio is a non-profit collaborative between Meeting You Podcast and Principled Research Resources, with support from The OMSLife Foundation. Here, we feature unique perspectives from patients, caregivers, healthcare providers, researchers, and advocates. Through candid conversations and personal stories, we hear lessons learned, successes, and challenges to address.

Caregiver Series

Maura McNamara, a devoted mother, healthcare professional, and now author, shares her family’s emotional journey with Opsoclonus-Myoclonus-Ataxia Syndrome (OMAS)—a diagnostic odyssey that began when her daughter Ellery was just two and a half years old. Maura eventually channeled that experience into a beautiful children’s book, Ellery the Brave Celery, written to help others better understand the OMAS journey in a way that is accessible to both kids and adults.

EP(C)13: Maura McNamara, OMAS Advocate & Caregiver

Provider Series

Dr. Lim, a pediatric neurologist at Evelina London Children’s Hospital, shares his insights into the challenges of diagnosing OMAS, the role of neuroblastoma in disease progression, and treatment strategies. We explore the importance of early intervention, the impact of immunotherapy, and how international collaboration is driving better outcomes for patients worldwide.

EP(PR)12: Ming Lim, MD, OMAS Provider

Caregiver Series

Bhavna Sivanand Dias, Executive Director of the UCLA Center for Impact and OMAS advocate, shares her family's rare disease journey. Beyond providing a window into the challenges faced by families in the rare community, her experience offers hope for those fighting OMAS.

EP(C)11: Bhavna Sivanand Dias, OMAS Advocate & Caregiver

Founder Series

Rachel Heilmann is Co-Founder and President of The Rory Belle Foundation, an organization created to advance understanding and treatment of NARS1-associated disorders. In this episode of Rare Awareness Radio, Rachel shares her deeply personal journey from a career in clinical pharmacy to becoming a fierce advocate for families affected by ultra-rare diseases.

EP(F)10: Rachel Heilmann and The Rory Belle Foundation

Founder Series

Sunitha Malepati, a caregiver, lawyer, and former professor at Georgetown Law School, is vice president of the CACNA1A Foundation and founder of The Buffalo Initiative. In a recent episode of Rare Awareness Radio, she shared her journey in rare disease advocacy, starting with her daughter’s diagnosis with a CACNA1A gene mutation and leading to her much broader effort to bridge the gap in the development of treatments for rare diseases.

EP(F)9: Sunitha Malepati, The CACNA1A Foundation, and The Buffalo Initiative

Founder Series

Yiwei She is the founder of the TNPO2 Foundation. A mathematician and AI professional who became a rare disease advocate when her son, Leo, was diagnosed with an ultra-rare genetic condition. Her foundation and Project Baby Lion are dedicated to advancing precision medicine and improving early genetic diagnoses for children with rare diseases.

EP(F)8: Yiwei She, TNPO2 Foundation and Project Baby Lion

Caregiver Series

Chanin Zaragoza and her son Zeke share their experiences overcoming Zeke's OMAS diagnosis at 36 months old. Zeke 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.

EP(C)7: Chanin & Zeke Zaragoza & Their OMAS Journey

Founder Series

Adam Clatworthy is a co-founder of CRELD1 Warriors, a UK-based charity supporting families affected by the ultra-rare genetic condition CRELD1. In this episode, Adam shares his deeply personal journey navigating his children's diagnoses, building a global community, and advocating for awareness and research. Learn how one family's determination creates a lifeline for others in the rare disease community. For more information, please visit https://www.creld1.com/

EP(F)6: Adam Clatworthy & Creld1 Warriors

Founder Series

Kate Vinokurov is the founder of Cure OTCD, a nonprofit organization dedicated to finding a cure for ornithine transcarbamylase deficiency (OTCD), a rare urea cycle disorder. Kate’s journey began when her son, Etan, was diagnosed with this life-altering condition shortly after birth. Determined to improve his quality of life and that of others affected by OTCD, Kate transformed her personal challenges into a mission to drive change. Through CureOTCD, Kate focuses on advancing critical research, raising awareness, and fostering patient advocacy. To learn more, please visit cureotcd.com.

EP(F)5: Kate Vinokurov & CureOTCD

Founder Series

Jill Hawkins is founder and president of The FAM177A1 Research Fund, a nonprofit organization created to accelerate the development of treatments for the nano-rare genetic disease FAM177A1 disorder, that affects two of her children. Jill oversees the fund's operations, fundraising, and partnerships, working with researchers, clinicians, biotech companies, and other rare disease stakeholders. She also shares her family's journey and raises awareness about FAM177A1 Disorder through various podcasts, panels, and publications. To learn more, please visit https://www.curefam.org.

EP(F)4: Jill Hawkins & The FAM177A1 Research Fund

Founder Series

Carolina Sommer is the CEO and founder of the Born A Hero Research Foundation and co-founder of the Northwest Rare Disease Coalition. A dedicated advocate, author, and lobbyist, Carolina’s journey in the rare disease community began with her daughter’s diagnosis of Pfeiffer syndrome. She has since become a leading voice for rare disease awareness, passionately working to support families and drive forward meaningful change through community-focused initiatives, patient-led research, and policy advocacy. For additional information, please visit bornahero.org.

EP(F)3: Carolina Sommer & The Born a Hero Foundation

Founder Series

Jeffrey T. Kramer, M.S. created the Chondrosarcoma Foundation to honor his daughter Shayna Kramer’s legacy. He combines his 24 years experience in substance abuse counseling, communication, and marketing with his experience in broadcasting to produce film and videos. In addition, Jeffrey has been a certified Emergency Medical Technician and a Volunteer Firefighter for the Prince George’s County Fire Department. Mr. Kramer operates his own multimedia production company called Kramer Communications. For more information, please visit csfshayna.org.

EP(F)2: Jeff Kramer & The Chondrosarcoma Foundation

Founder Series

Mike Michaelis, founder and president of The OMSLife Foundation, established the organization in 2009 after his granddaughter's OMS diagnosis. The foundation aims to support patients and caregivers, raise OMS awareness, and fund research. Their OMS Patient Reported Natural History Study, developed in collaboration with NORD and funded by the FDA, currently has nearly 400 registrants. Mike is dedicated to connecting patients with top care providers and has expressed gratitude for interacting with numerous OMS patients, families, specialists, and researchers globally. For more information, visit omslifefoundation.org.

EP(F)1: Michael Michaelis & The OMSLife Foundation