))
Facing Alport Syndrome: A Teen/Young Adult Perspective
Manage episode 293151214 series 2861129
Content provided by Tammy Flynn, Tammy Flynn: podcaster, and Special needs advocate a. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Tammy Flynn, Tammy Flynn: podcaster, and Special needs advocate a or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.
As we wrap up our Alport Awareness Series, I am so excited to welcome to the show, Grant Bonebrake & Maddie Martin, Volunteer Patient Advocate Alport Foundation.
About Grant: Grant Bonebrake is a high school senior in San Diego, CA. He was misdiagnosed with the wrong kidney disease until age 11 when he experienced hearing loss that led to proper diagnoses of Alport syndrome, a rare genetic kidney disease. His involvement with Alport Syndrome Foundation led him to become an active patient advocate. In December 2020, Grant received the national RareVoice Award (Teen Category) for Legislative Advocacy from the EveryLife Foundation for Rare Diseases. He also volunteers with the Young Adult Representatives of Rare Disease Legislative Advocates program, and National Kidney Foundation. Grant is currently working with other teens to document the experiences and insights of young people living with Alport syndrome.
About Maddie: Maddison Martin just turned 22. She was originally misdiagnosed with Glomerulonephritis at age 2 before receiving a formal diagnosis of Alport syndrome, via kidney biopsy, at 4-years-old. At the age of 20, she received the Gift of Life in the form of a kidney transplant from her high school attendance secretary, Tammy. Inspired by her Alport journey, Maddison is currently a nursing student and enjoys spending free time with her family.
Listen in as Maddie & Grant share their personal journeys, the physical & emotional aspects of being a teen with rare disease and how they have embraced their diagnosis.
#AlportAwareness
100 episodes
Share
