Celebrating Living Kidney Donors
April is Donate Life Month. To help spread awareness and provide information about the donation process, we have some new resources to share.
First, we reached out to some of the living donors in our community who have stepped forward to save someone’s life. In the video below, those who have given the gift of life to an Alport patient share their experiences, motivations, and recommendations to others considering this path.
Click below to watch a preview of this video!
Click the “CC” button for closed captioning.
You can watch the full video on our updated Transplant page. We’ve added many new resources to this page for prospective donors and recipients to help prepare them for this step in their Alport journey.
ATHENA Natural History Study Data Published
From 2014 to 2017, 165 individuals living with Alport syndrome contributed their time, personal health histories, and bio samples to advance research in our rare genetic kidney disease through the ATHENA Natural History Study. The data was collected by a pharmaceutical company with a drug candidate that did not move past a phase 2 study.
However, with long-term advocacy by ASF and goodwill from the researchers and industry partners, the data has now been published in Kidney International Reports. This is extremely valuable data that supports the therapeutic pipeline in Alport syndrome.
Thank you to all of the patients who gave so much of their time and dedication to participate. This collective data is critically important.
Click here for a summary of the article by ASF’s Research Director, B. André Weinstock, PhD.
Join Us!
Connect with others in our community and learn from their experiences. We are excited to talk with you about these topics at our upcoming virtual meetings:
Living Organ Donation: Experiences From Our Community
April 23, 2025
7:30 PM ET / 4:30 PM PT
Alport Women’s Health
May 20th, 2025
7:00 PM ET / 4:00 PM PT
These conversations are open to patients and caregivers ages 18+. To encourage open conversation, Direct Connect events are live and not recorded.
What Does Living with Alport Look Like?
You tell us! We’re inviting you to share your image of what living with Alport syndrome looks like. We’d like to put together images from patients from everywhere to share this summer at Alport Connect 2025, as well as with our wider community.
It can be a photo, drawing, or any other visual representation of what you would like to communicate about your life and experience living with our rare genetic kidney disease. We’ll put the images together in a video format and share them with you all.
Images will be kept anonymous. This is a public project, so we request visuals that can be shared with all ages.
We’re often asked by researchers and pharmaceutical/biotech companies what our lives with Alport syndrome are like. Please help us show them (and each other)!
Please send one image to [email protected] by June 10, 2025.
Let’s Put Our Lab Results to Work
Our lab results guide us on critical matters like the current status of our kidney function, if our medication doses may need to be adjusted, if more attention needs to be paid to a renal-friendly diet, and more. They can also be used in valuable ways to help support research and drug development in our disease.
Important reminders:
- ASF Alport Patient Registry: If you are enrolled in the registry, please update the few requested lab values every 6 months upon receiving a reminder from “ASFAlportpatientregistry @ healthie.net.” These lab values reported over time will provide critical data to support the development of potential new therapies. ASF’s investment in this unique and powerful patient registry relies on continued patient participation. If your email has changed and messages are not being received from the email address above, please contact [email protected]. If you haven’t yet joined this important, ongoing research project, learn how to participate at our ASF Alport Patient Registry web page.
- NEPTUNE Natural History Study: If you are enrolled in the Alport cohort of the NEPTUNE study, please be prepared to participate in lab tests (blood and urine) at every visit. Data collected at each visit is critical for this research, which is sponsored by ASF’s Research Fund. Study coordinators report that they are happy to make it easy for participants to combine the collection of labs for both the NEPTUNE study and for personal nephrology checkups for both adult and pediatric patients.
As patients driving and funding our own research, we are creating change and helping lead the way toward potential new therapies or a cure by providing the human data required for industry and the FDA. THANK YOU!
View our Newsletters and Announcements page for an archive of prior communications.