August 2023 Newsletter

Newly Expanded Transplant Surgery Resource

Early in 2022, a group of two dozen Alport syndrome kidney transplant recipients gathered for a series of ASF-hosted virtual meetings to discuss shared experiences and identify gaps in patient education about transplant care. This culminated in ASF’s first-ever “Things Transplant Patients Wish They Knew Before Surgery” educational resource, made available on ASF’s website.

Now, almost a year and a half later, ASF is pleased to share an updated and expanded version of this resource, featuring input from many more Alport transplant recipients.

Through a series of discussion prompts, this document covers considerations for pre-surgery, immediately after surgery, and short- and long-term transplant care. It includes questions that can be addressed with a transplant care team to help ensure a kidney recipient’s needs are met and informed decision making is facilitated with patient input.

As transplant care evolves, we want to make sure our community’s knowledge about the topic does too. Thank you to all those who helped make both editions of this resource possible.

Successful 2nd Annual Cornhole Fundraiser

Earlier this month, Amy Rhodes and her family held the 2nd Annual Cornhole for Kidneys fundraiser in Appleton, Wisconsin, to support ASF and build Alport awareness. Amy is an ASF Board Member, Alport syndrome patient, and the mother of a young patient.

The event was an overwhelming success.

“With 32 teams in the field, and a newly introduced age 14 and under bracket, participants and spectators enjoyed the competition, the opportunity to participate in an auction, and tons of food and fun. Most importantly, over $31,000 was raised to support Alport syndrome research and awareness, bringing the event’s two-year total to over $57,000. Planning is underway for year three. We look forward to the continued positive impact we will be able to make within the Alport community. Alone we are rare, but together we are strong,” notes Amy.

Want to learn more about this event or discuss how to plan your own? Email ASF Staff.

Alport Connect 2023: San Diego Event Updates

With less than 6 weeks until our in-person meeting, we want to share some important updates:

• This October 7 & 8th event is almost at capacity. A limited number of spaces and travel stipends are still available to U.S. patients/families. Get your ticket(s) today to guarantee event admission.
• Free event registration will remain open until all tickets are gone or, at the latest, 11:59 pm Pacific Time on Friday, September 22nd.
• In addition to expert presentations, the adult agenda includes breakout sessions for males, females, transplant recipients, and those interested in learning more about managing emotional health. The teen agenda features sessions with pediatric nephrologists and our Emerging Leadership Council of young adult patients. The agenda for children, co-facilitated by a nurse educator, will include hands-on learning experiments, creative art projects, and age-appropriate education.

Click here to join us for an unforgettable weekend of education and social connection!

COL4A3-Centric Research Published

A new scientific article in Kidney International Reports sheds light on the prevalence and effects of COL4A3 autosomal dominant Alport syndrome in the United States.

ASF’s Volunteer Research Director and Board Member, B. André Weinstock, PhD, MSAS provides a summary of the article at this link.

Patient Leader Begins Pediatric Residency

ASF congratulates Emerging Leadership Council (ELC) member, Maxwell Lagas, on the completion of medical school and the start of his career as a resident in pediatric nephrology. Now, we are aware of at least one pediatric nephrologist that can very personally relate to growing up and living with a diagnosis of Alport syndrome. Our rare, genetic kidney disease affects at least three generations of his family.

“As hard as it was to get a diagnosis of Alport syndrome at such a young age, it inspired me to take control of my health and pursue a career helping people just like me. I recently started as a pediatric resident at Loma Linda University Children’s Hospital in California and have already been able to work with patients with chronic illness and truly help them like I always dreamed of,” notes Dr. Lagas.