Claire 4 Rare Meets Joshua
September 20, 2021Rare Storytellers Meets Milwaukee
September 19, 2023In partnership with Children’s Hospital of Wisconsin and the Genomic Sciences and Precision Medicine Center (GSPMC) at Medical College of Wisconsin (MCW) and sponsored by Orchard Therapeutics, Rare Storytellers presents: Women and Rare Disease!
Thursday, December 9 12:00 – 2 PM CT
This event is free and open to the public. Register Here
More than 7,000 Rare Diseases collectively impact over 350,000,000 people worldwide. Sharing songs and stories unite a stronger voice for all of those living with life-limiting and life-threatening rare diseases that have no treatments or cures.
On The Mic
Featured Rare Storytellers
Belle Banke
Belle is a recent graduate of Carroll University, and currently employed by the Cognitive Neuroscience Research Program at Medical College of Wisconsin. Belle was diagnosed with Marfan Syndrome at age two, and re-diagnosed with Loeys-Dietz Syndrome at age seven. She had her first open-heart surgery in July of 2017, and has suffered from complex medical-PTSD since then. Despite living with a rare chronic condition, Belle sees herself as a normal twenty-something who enjoys things such as hiking with her dog Elsa, reading, writing, and playing Animal Crossing.
Claire Bevec
Claire was born with Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF), underdeveloped lungs, a hole in her heart, and a cleft lip and palate. Doctors said she wouldn’t survive. Nineteen years later, she is still here. Over the years, her lungs grew stronger and the hole in her heart closed. Her kidneys continued to fail with hundreds of cysts growing, and at nine years old she received a lifesaving kidney transplant. She grew up going to doctors’ appointments instead of the park and camping out in the ER instead of in her backyard. However, she wouldn’t change it for the world. It’s made her who she is. Instead of harboring anger, she has learned to tell her story. As a Rare Storyteller for Harmony 4 Hope, she advocates for others like her by talking to medical professionals and students about recognizing the effects of rare disease on individuals and their families. Claire also meets with legislators to advocate for the healthcare needs of children, and hopes to inspire others to not let their suffering define their personhood.
Featured Musical Guest
Cameron James
Singer songwriter and Rare Disease Advocate, Cameron James will be performing!
Featured Rare Disease Experts
Stephanie Gerber
Stephanie is a board certified pediatric genetic counselor at Children’s Wisconsin and Medical College of Wisconsin. She has a master’s degree in genetic counseling from Case Western Reserve University in Cleveland, Ohio and has been practicing for 3.5 years. She sees patients in various different specialty clinics, including the RASopathy/Neurofibromatosis Clinic and hereditary connective tissue disorders clinic. She also helped establish a multidisciplinary aortopathy clinic early this year along with a geneticist and cardiology team with the goal of providing collaborative care for patients with aortic disease, including Loeys Dietz syndrome. As a genetic counselor, her role is to provide support, resources, and education for patients with rare genetic conditions and their families and to help them navigate through the rare disease journey.
[Moderator] Angela Mathison, PhD
Angela is the Director of Research & Development at the Genomic Sciences & Precision Medicine Center (GSPMC). Angela is also an Assistant Professor in the Department of Surgery | Division of Research.
About Rare Storytellers
Rare Storytellers, a division of Harmony 4 Hope, is a rapidly growing network of rare disease patients, musical ambassadors and scientific experts coming together to educate on rare diseases and create community in support of the 350,000,000 people worldwide collectively impacted by over 7,000 different rare diseases because…The Best Songs Start with a Story.