A LETTER FROM EXECUTIVE DIRECTOR LISA BONEBRAKE
Welcome to Alport Syndrome Foundation (ASF).
I’m glad you found our organization, just as I did after my son was diagnosed with Alport syndrome at age 11. I was misdiagnosed with the wrong kidney disease for more than 4 decades, which led to my son being initially being misdiagnosed as well.
When I first reached out to ASF as a suspected patient years ago, Co-Founder Sharon Lagas treated me like an extension of her family. I was emotional and full of questions. In my role as Executive Director of ASF since 2019, I approach the work with deep gratitude and respect for this remarkable organization, and for those who founded and sustain it.
Meeting medical experts in Alport syndrome, and other patients and caregivers, changed everything for my family. When the time came at age 19 for my son to prepare for dialysis and kidney transplant surgery, we benefitted significantly from critical guidance and support from the ASF community.
Like many other families I have now come to know, my son’s hearing loss was the clue that helped me find the ASF website. The research articles and patient stories resonated with me immediately. Information from experts provided the evidence I needed to share with medical providers, and the confidence to advocate for testing, proper diagnosis, and recommended treatment.
I encourage you to register for free membership with ASF (see blue FREE MEMBERSHIP button at top right of our website) so that we can stay in touch. We want to keep you updated about treatment recommendations, research, opportunities to connect to others and to medical experts, raising children with our disease, clinical studies, inspiration in our community, and more. Financial support from our community makes membership and all of our educational resources free of charge for everyone. We welcome patients, family members, clinicians, researchers, and pharmaceutical industry representatives to join our membership. We’re all in this together as we work to improve lives and outcomes, and conquer Alport syndrome.