ASF Representation at 2024 “Kidney Week”
ASF volunteers and staff members helped spread awareness about Alport syndrome at our exhibit at the American Society of Nephrology’s “Kidney Week” in San Diego October 23–27. Our table was well attended by nephrologists, researchers, and drug development representatives from around the world.
ASF also exhibited an informational poster with initial data and an overview of the ASF Alport Patient Registry, now available for access by researchers and industry exploring new therapies. On another hopeful note, three separate scientific presentations were given on a variety of novel approaches to potential genetic therapies for Alport syndrome.
Registry Update: You Did It — Let’s Keep Going!
Thank you for helping us reach our goal before the end of the year. The ASF Alport Patient Registry now has more than 500 U.S. patients enrolled, representing a variety of ages, stages of disease, and genetic types.
ASF has focused on this registry as our top priority to drive research in our rare disease. The more patients enrolled, the more valuable the registry becomes.
For those enrolled, THANK YOU, and please remember to keep updating your lab results, medications, and other changes over time when requested by email. For those not yet enrolled, please consider participating in this critical tool driving research.
Volunteer Spotlight: Dusty Atchison
Last month, Emerging Leadership Council (ELC) member Dusty Atchison represented ASF at the 2024 NORD Breakthrough Summit on October 20–22 in Washington, D.C.
Dusty learned about a variety of relevant topics related to the work of the ASF, including novel gene therapies, new medical devices, advocacy efforts, policy priorities for the rare disease space, and more. He also connected with different organizations and leaders across the field, learning about their successes and challenges. He’s excited to share his insights with the ASF staff and bring his learnings to the ELC.
As an added bonus, he was able to connect with ASF board member, December West, while in town, as shown in the photo above. Of the experience, Dusty noted, “I’m incredibly grateful for the opportunity, and I look forward to representing ASF however I can moving forward.”
New Pediatric Clinical Trial Sites Open in U.S.
FIONA is a phase 3 placebo-controlled clinical trial studying an investigational medication called finerenone in pediatric Alport patients.
The following sites are now open and recruiting Alport patients ages 2 to <18 years old:
Johns Hopkins Hospital
Baltimore, Maryland
Contact: [email protected]
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio
Contact: [email protected]
Other sites that are enrolling can be found in Kansas City, MO; San Antonio, TX; and Seattle, WA, with additional sites to come. To learn more about the study, including information about all site locations, visit our Clinical Trials – Active Studies page.
Thanks for Your Support
Thanks to hundreds of patients, family, and friends, ASF exceeded its 2024 Annual Campaign goal with a total of $271,000 raised to support 2025 priorities. This helps ensure we can provide all of our programs, projects, educational resources, advocacy efforts, and patient meetings free of charge for everyone.
We appreciate your generosity and demonstration of confidence in the work we’re doing to improve the lives of individuals living with Alport syndrome. Special thanks to our wonderful campaign volunteers for reaching out to their networks of support – you really came through for ASF!
If you haven’t yet made a gift of any size to ASF this year, please consider contributing before the end of year. It all adds up to HOPE, ACTION, SUPPORT, and CHANGE!
New ASF Gear for the Holidays
ASF is pleased to announce the addition of a new item in our Bonfire merchandise store ahead of the winter holidays.
We have added a loose-fit crewneck sweatshirt emblazoned with the ASF logo and tagline. It is available in five colors and sizes S through 2XL. Thank you, Endriunas Family, for being our ASF models (pictured right).
Click here to view our new sweatshirt.
Our main ASF Bonfire store, linked below, includes other cozy winter gear, such as a pullover hoodie, long-sleeve t-shirt, and zip-up hoodie. As an added bonus, a small portion of your purchase directly supports ASF.
You can also visit alportsyndrome.org and click the blue “ASF Merch” button in the top left-hand corner to access our store year-round.
View our Newsletters and Announcements page for an archive of prior communications.
