November 2023 Newsletter

Thank You for Sustaining Our Efforts

Thanks to YOU – our community of patients, families, and friends – our 2023 Annual Campaign raised roughly $284,000 with 427 individual gifts, exceeding our ambitious 3-week campaign goal by $34,000.

Thank you to all the returning donors for their ongoing support and demonstration of confidence in our work. We are grateful to all the first-time donors as well, whose contributions support our mission to improve the lives of individuals living with Alport syndrome. Our largest annual expense is investment in research.

The success of our Annual Campaign would not have been possible without our campaign volunteers. We appreciate them sharing their family stories and personalized fundraising pages with their networks.

The Onder Family chose to host their second annual “Cars & Kidneys” event during our Annual Campaign, raising more than $24,000. Generous event sponsorship was provided by Ferrari of Washington.

We are grateful and inspired by the creativity and dedication of campaign volunteers like the Onder Family and others who raise awareness, support, and critical funds for ASF.

Thank you to all 2023 Annual Campaign donors and volunteers. Your contributions help ASF turn hope into action every day.

Patient Representation at 2023 ASN Kidney Week

Earlier this month, ASF exhibited at the American Society of Nephrology’s (ASN) 2023 Kidney Week conference in Philadelphia, Pennsylvania. The meeting brought together over 12,000 participants in the nephrology space from over 100 countries.

ASF staff and several board members had the opportunity to interact with medical professionals and educate them about the ASF Alport Patient Registry, NEPTUNE natural history study, treatment guidelines, and our many available resources including our Patient Guide, Family Planning Guide, and children’s coloring book.

Additional highlights of the meeting include:

• More than 30% of academic posters in the glomerular disease category specifically included “Alport syndrome” in the title. Posters reflected academic research being conducted globally.
• A session discussing data and clinical trial design for potential therapeutic options such as SGLT2is in pediatric chronic kidney disease patients, which built on progress and input from a meeting ASF attended in July on the topic.
• Meeting with multiple members of our Medical Advisory Committeeand Scientific Advisory Research Network, some of whom were presenting on Alport syndrome.

ASF looks forward to next year’s Kidney Week to be held in San Diego on October 23–27.

Research: Aortic Aneurysm in Alport Syndrome

It is not currently well understood whether Alport syndrome, as a collagen disorder, is an independent risk factor for aortic aneurysm. Kamiar et al. recently published a relevant case report of a female Alport patient, along with a review of all cases of aneurysms in Alport patients that have been published to date.

These initial findings, published in BMC Nephrology, seem to point toward a probable association of Alport syndrome with aortic aneurysm.

Click here to read the full article summary, prepared by Board Member and Volunteer Research Director Dr. André Weinstock.

Support ASF + Alport Awareness With Winter Apparel

ASF is pleased to announce the addition of a new, limited-edition item in our Bonfire merchandise store. As an added bonus, a small portion of your purchase directly supports ASF.

We have added a lightweight, super soft, zip-up hoodie that is emblazoned with the ASF logo and tagline. It is available in three colors and sizes XS through XXL.

Click here to view our new zip-up.

Bonfire is only making this product available to nonprofits throughout the holiday season – so supply is limited. Orders placed by December 4th are expected to be delivered by December 22nd.

Our main ASF Bonfire store, linked below, includes other cozy winter gear, such as a pullover hoodie and long-sleeve t-shirt.

You can also visit alportsyndrome.org and click the blue “ASF Merch” button in the top right-hand corner to access our store year-round.