
Top ASF Accomplishments in 2024
As 2024 comes to a close, we would like to take a moment to celebrate the incredible milestones we’ve achieved together as a community. Each accomplishment is a testament to the unwavering engagement and support of the ASF Community, demonstrating how our collective efforts can lead to transformative change.
- Added Research Director to Staff: In January, B. André Weinstock, PhD, joined the ASF Staff as Research Director to support our growing pharmaceutical pipeline. His contributions in 2024 have been immeasurable and allowed us to keep up with the growing interest in Alport research and potential ameliorative or disease-modifying treatments.
- Alport Connect: In July, we held a 2-day, in-person meeting in Denver, Colorado, bringing together adult and teen patients from across the country with experts in the field of Alport treatment and research (attendees are shown in the photo above). Stay tuned for an announcement in January’s newsletter about our 2025 meeting!
- Natural History Study Is Fully Enrolled: This year, the Alport cohort of the ASF-funded NEPTUNE Natural History study reached its ambitious goal of 65 fully enrolled patients in record time. The participants’ biosamples are now accessible to researchers and companies exploring Alport syndrome and will become more valuable over time as longitudinal data is collected.
- Annual Campaign Goal Exceeded: With your help during our Annual Campaign season, we surpassed our goal of $250,000 by more than $25,000. These funds ensure all of our programs, projects, educational resources, advocacy efforts, and patient meetings remain free for everyone in our community.
- Registry Goal Met and Surpassed: In September, we asked for your help to reach a goal of 500 enrollees in the ASF Alport Patient Registry, and you answered the call — by November, we not only met this goal but exceeded it! Thank you to everyone who has stepped up so far to move the needle forward in critical Alport research.This data is growing and now available for access to support research and pharmaceutical interests.
- ASF Membership and Facebook Support Group Growth: At the time of this newsletter, we have welcomed roughly 500 new members to the ASF community in 2024. Additionally, our international, moderated Facebook support group grew by over 800 patients and family members since January 1st.
Let’s celebrate the strides we’ve made and look ahead to even greater achievements in the coming year!
Funds Awarded to Young Adults with Alport
From top left:
Carlie, age 17; Hava, age 18; Landon, age 18;
Savannah, age 18; Wayman, age 18
We are happy to announce the 2024 recipients of the Paul Silver Enrichment Award (shown above). Click here to learn about this year’s awardees and how they plan on using the funding to support their goals.
This annual award is provided by the Silver Family and ASF in memory of Alport patient Paul Silver to assist young people affected by Alport syndrome achieve their passions and ambitions.
CKD Medications in Current Practice
In a recent article published in the Journal of the American Society of Nephrology, Dr. Richard A. Lafayette shares his perspective on the adoption – or lack thereof – of medications to slow renal decline in patients with chronic kidney disease (CKD). Dr. Lafayette considers the causes influencing this lag in uptake and urges his fellow nephrologists to “evaluate the potential benefits of further evaluation and treatment for each of your patients and master and optimize the use of these new broadly safe and effective agents.”
ASF Community App Closing Soon
In the interest of using our financial resources as wisely as possible, we are discontinuing the ASF Community app. We have worked with the host to be sure that all data will be permanently deleted.
Use of the ASF Community app has fallen off now that we are holding Alport Connect meetings in person again and often hosting topic-based Direct Connect meetings online. Significantly more ASF members make use of our Facebook Support Group and/or connect with us over email/calls/virtual settings.
Users will be able to access the app until January 30, 2025. If you do not delete the app, it will remain on your mobile device, but you will no longer be able to access ASF content.
If you have any questions or concerns, please contact [email protected].
View our Newsletters and Announcements page for an archive of prior communications.