Building Connection and Education in Denver
ASF would like to thank the attendees, sponsors, guest speakers, and volunteers who made Alport Connect Denver a wonderful event.
- We are pleased to share that 100% of adult and teen attendees who evaluated the event would recommend Alport Connect to other patients and families.
- Adults and teens alike also gained an average of 2 points (on a scale from 1–10) in knowledge about Alport syndrome from the meeting.
“Our first time here and couldn’t be happier with the social experience and education. Thank you!”
“We are all in this together… To hear the variety of doctors, clinical trials, genetic testing, and so many individuals working together for our community brings me a sense of peace and comfort.”
“I learned more than I hoped. Everyone here is amazing!”
“Thank you for being a beacon of hope in a world that struggles to find that.”
Paul Silver Enrichment Award Cycle Now Open!
The 2024 award cycle of ASF’s Paul Silver Enrichment Award is now open and we are accepting applications. 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. Completed application forms are due by 5:00 PM local time on Friday, October 25, 2024, and the award winner(s) will be notified in December.
We were honored to have several past award winners present at the Alport Connect meeting this year, including 2023 award recipient, Liam. Click the video below to hear how Liam has used this award and why he encourages other young patients to apply.
Click the “CC” button to activate closed captioning.
Join Us!
Whether you or your child are about to head off to school or you’ve just completed a major move, establishing medical care in a new place can be daunting. Connect with fellow patients and caregivers and share your experiences! All those ages 18+ are welcome to attend.
Alport Care Away From Home
September 5, 2024
7:30 PM ET / 4:30 PM PT
To encourage open conversation, Direct Connect events are live and not recorded.
New Scientific Publications on Alport Syndrome
There are two major classifications of glomerular kidney disease: nephritic syndromes and nephrotic syndromes. While Alport syndrome is nephritic, with an “i”, it is often misdiagnosed as nephrotic, with an “o”. Hence the importance of two recent articles authored by members of ASF’s Medical Advisory Committee (MAC) and Scientific Advisory Research Network (SARN).
Also in the recently published Alport-related literature were the conclusions of Sanofi’s HERA trial and an associated editorial by ASF’s Research Director B. André Weinstock, PhD.
Clinical Trials Open to U.S. Alport Patients
The goal of the Alpestria-1 Study sponsored by ENYO Pharma is to evaluate the efficacy and safety of the investigational medication Vonafexor on the renal markers of patients with Alport syndrome. The drug aims to improve kidney function in adult and pediatric patients (ages 16–55). This is not a placebo-controlled study, meaning that all participants will receive Vonefexor once daily for 24 weeks. Currently, there are 3 sites open in the U.S. actively enrolling: Boise, Dallas, and Chicago. For more information and contact details for each site, visit the Alpestria-1 Study listing on our website.
The goal of the FIONA Study sponsored by Bayer Pharmaceuticals is to evaluate the effect of the investigational medication finerenone on urine protein in pediatric patients ages 2–18 with chronic kidney disease, including Alport syndrome, despite taking the standard of care ACE and ARBs medications such as lisinopril or losarten. Finerenone (trade name: Kerendia) has been studied in more than 13,000 adults with chronic kidney disease and been approved by the FDA to treat diabetic kidney disease. Currently, there are 3 sites in the U.S. actively enrolling: San Antonio, Kansas City, and Seattle. For more information and contact details, visit the FIONA Study listing on our website.
The R3R01 Study sponsored by River 3 Renal Corp. is a Phase 2 clinical trial investigating the efficacy and safety of R3R01 medication in adult patients with Alport syndrome. The goal is to preserve kidney function and decrease the level of protein in the urine of patients. The R3R01 Study is open to patients ages 18 years and older. Currently, there are 11 sites in the U.S. actively enrolling patients. For more information and contact details for each site, visit the R3R01-ASFSGS Study listing on our website.
View our Newsletters and Announcements page for an archive of prior communications.
