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June 2024 Newsletter

New Alport Clinical Trial Enrolling in the U.S

A new clinical trial will be evaluating the effect of the investigational medication Vonafexor on renal markers in individuals living with Alport syndrome. Participants may remain on standard-of-care blood pressure medications, such as lisinopril or losartan, and/or an SGLT2i, such as Farxiga, while participating in this clinical trial.

The study is open to individuals ages 16 to 55. To learn more about this study and to review the full list of participation criteria, please visit our clinical trials page on the ASF website or email ASF Staff. We have also created a Clinical Trial Questions and Considerations resource with input from patients and members of our Medical Advisory Committee.

Alpestria-1 study sites are located in Alabama, California, Idaho, Illinois, New York, Missouri, and Ohio. Several sites are beginning enrollment over the next month. Look for upcoming emails from ASF with direct study site contact information if you live geographically close to these locations. Please note that patients can be reimbursed for study-related expenses such as travel or lodging costs as allowed by regulators.

3rd Annual Cornhole for Kidneys Fundraiser

The 3rd Annual Cornhole for Kidneys event was held on June 2nd in Appleton, Wisconsin. The fundraiser was hosted by Amy Rhodes, who is an Alport patient, mother of a patient, and an ASF Board Member.

“It has been an absolutely incredible experience having our community and local organizations rally around us year after year as we host our Cornhole for Kidneys Fundraiser Event,” Amy said. “It’s amazing how much support you receive when you tell your story.”

“Over the course of 3 years, we’re proud to say we have raised over $85,000 for Alport Syndrome Foundation. We look forward to the positive impact we will be able to make within the Alport community and hope others will join our efforts in the future,” Amy concluded.

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

Paul Silver Awardee Update and 2024 Dates

We are pleased to announce that ASF’s Paul Silver Enrichment Award will be open for applications this summer! U.S. patients ages 18 to 24 who are affected by Alport syndrome can apply for the award to support education, complete a project, or pursue an activity that will enhance the applicant’s life.

Awards of up to $3,000 are offered by the Selection Committee to individual applicants who best meet the evaluation criteria.

The application process will open August 5th – watch for a formal announcement in an upcoming newsletter and on our social media. Completed application forms will be due by 5pm local time on Friday, October 25, 2024, and award winner(s) will be notified in December.

Created in his memory, Paul Silver’s family and ASF annually award a young person/s affected by Alport syndrome with funds to encourage their pursuit of personal ambitions and interests.

Click the video below to watch 2023 award recipient, Rachel, explain why she encourages others to apply.

Click the “CC” button to activate closed captioning.

New Research: Genetic Testing in Adults With CKD

Two recently published clinical research articles in high-impact nephrology journals address the need for increased genetic screening to correctly diagnose kidney diseases, including Alport syndrome.

ASF Research Director, B. André Weinstock, PhD, graciously provided a layman’s summary of these recent articles and the context for their importance within the nephrology community.

Click here to read brief summaries of these articles.

View our Newsletters and Announcements page for an archive of prior communications.