New Video Resource: A Closer Look at Alport Genetics
At our Alport Connect 2024 patient meeting, we had the pleasure of including a presentation from Libby Valenti, MS, LCGC, who serves as Associate Director of Clinical Strategy and Development for the Organ Health division at Natera. Ms. Valenti presented recent findings from the Renasight genetic testing program, including prevalence numbers of COL4A3-5 variants, statistics of kidney disease progression, and more.
To be sure this information reaches as many patients and families as possible, Ms. Valenti graciously agreed to record this presentation, which can be viewed by clicking the video image below.
Music City Kidney Fundraiser for ASF
ASF is grateful to the Dunlap Family, who are ASF members from Tennessee, and to the Board of Directors of Music City Kidney Fundraiser for organizing their second annual event to support our organization. This Nashville event included a daytime paintball game and an evening of casino games, live music, Southern food, and a professional magician. Featured in the photo above is the Dunlaps’ daughter, who is also living with Alport syndrome.
John Dunlap shared a bit about his journey with Alport syndrome with attendees, bringing awareness to the significant unmet need in our rare kidney disease. Through this year’s fun and successful event, Music City Kidney Fundraiser contributed a remarkable $80,000 directly to support ASF’s efforts. By helping ASF thrive and focus on its mission, these funds benefit the entire community of Alport patients and families.
John notes, “When I was a younger man, ASF helped connect my family with others who were trying to navigate life with Alport syndrome and eventually kidney transplant. ASF helped me in many ways, and our goal at Music City Kidney Fundraiser is to give back to ASF so that they can continue to help families living with Alport syndrome.”
Want to learn more about this event or discuss how to plan your own? Email ASF Staff.
ASF Staff Speak Out to Raise Awareness
This month, ASF’s Associate Director, Afton DeLucca, was invited to speak in her home state of Alabama to the local chapter of the American Nephrology Nurses Association.
In her presentation, she not only shared her personal journey with Alport syndrome, but educated attendees about receiving an Alport diagnosis, genetic inheritance patterns, disease progression, treatment options, and the many resources that ASF provides to patients like herself everyday.
Maddison Martin, ASF’s Patient Engagement Coordinator, was a recent guest on the Friends of NPACE (Nurse Practitioner Associates For Continuing Education) Podcast. As both a licensed nurse and a rare disease patient, Maddison has a unique perspective to draw from in educating others about Alport syndrome.
Visit our podcast page to check out Maddie’s episode as well as other podcast recordings with knowledgeable speakers from our community.
We’re 57% of the Way There!
Please consider making a gift of any size to help us reach our goal of $250,000 by October 30th. Gifts from patients, family, and friends make it possible for ASF to survive, thrive, and provide all of our programs and services for free. Together, we are advancing awareness, research, patient education, and a therapeutic pipeline toward treatments and/or a cure.
THANK YOU to all who have helped us reach 57% of our goal to date.
Here’s how you can give or learn more: 2024 ASF Annual Campaign
Clinical Trial Enrolling Alport Patients at U.S. Sites
Alpestria-1 is a new clinical trial evaluating the effect of the investigational medication Vonafexor on renal markers in individuals living with Alport syndrome.
The following sites are now open and recruiting Alport patients:
University of Alabama Hospital, Clinical Research Unit
Birmingham, Alabama
Contact: [email protected]
University of California Los Angeles, Nephrology Division
Los Angeles, California
Contact: [email protected]
Columbia University Medical Center, Division of Nephrology
New York, New York
Contact: [email protected]
Other sites that are enrolling can be found in Texas, Idaho, and Illinois, with additional sites to come. To learn more about the study, including information about all site locations, visit our Clinical Trials – Active Studies page.
View our Newsletters and Announcements page for an archive of prior communications.