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April 2024 Newsletter

ASF Funds Aortic Aneurysm Research

We are pleased to announce ASF’s Research Program has awarded funding of $132,825 to Drs. Carmen Halabi and Jeffrey Miner of Washington University in St. Louis to study the presence of aortic aneurysms in Alport mice. This grant award makes it possible to study the type IV collagen that exists in the kidneys, ears, and aorta to address the question of whether mutations in type IV collagen genes, found in Alport syndrome, increase the risk of aortic aneurysm formation.

Dr. Halabi notes, “More and more patients with Alport syndrome are reported to have aneurysms or dilation of blood vessels, which could lead to vessel rupture and be life-threatening. Whether this is related to abnormalities in type IV collagen in blood vessels is completely unknown. Using mouse models of Alport syndrome available in Dr. Jeff Miner’s laboratory (my colleague and an expert on this disease), we will tackle this exact question: Are patients with Alport syndrome at increased risk of aortic aneurysms? ASF’s support is invaluable in addressing this important question.”

By studying an animal model, this research is a first step toward better understanding of potential risk in human patients. Results from this 1-year study will be shared with ASF and our community.

To learn more about aneurysm research in Alport syndrome and other recent scientific publications, view our Published Articles & Papers page.

Living Kidney Donor Search Resource

Every April, we celebrate Donate Life Month — a time to reflect on, and spread awareness for, organ, eye, and tissue donation.

Currently, more than 89,000 individuals in the United States are awaiting a kidney transplant. With long wait times nationwide for deceased donor kidneys, many Alport patients turn to family, friends, and even strangers to find a compatible living donor.

To aid patients in their search, ASF gathered input from Alport patients who received a living donor kidney, their donors, and transplant nephrologist Dr. Alexander Wiseman, to prepare a new educational resource, “Considerations When Seeking a Living Kidney Donor.”

This document outlines ways to share the need for a living donor, including key conversation points, and provides important context about temporary dialysis, donor disqualifications, and more. View our transplant page for patient videos and other resources.

Join Us!?

In honor of Donate Life Month, we will be hosting a Direct Connect conversation about all things dialysis and transplant. If you have been through this yourself, or are curious to hear the experiences of others, all those ages 18+ are welcome to attend and connect.

Dialysis and Transplant Experiences

Tuesday, April 23, 2024

4:00pm Pacific / 7:00pm Eastern

Click here to register.

To encourage open conversation, Direct Connect events are live and not recorded.

We Need Your Help: Volunteer Research Project

Dr. Ron Korstanje of ASF’s Scientific Advisory Research Network is conducting important Alport research at The Jackson Laboratory in Bar Harbor, Maine. He has obtained a large cohort of Alport mice to better understand the disease process and the presence of kidney cysts in these mice.

With imaging performed on over 360 mouse kidneys in this newest cohort, Dr. Korstanje is requesting help from ASF volunteers to assess the presence (or absence) of cysts to better understand a possible connection to Alport syndrome. The project can be completed at home, on your schedule, and no experience or science background is needed to help!

If you are interested in donating your time to help advance Alport research, please email ASF’s Associate Director, Afton DeLucca, to learn more about the project and to get started today!

New Online Advocacy Platform

We are pleased to announce ASF has partnered with The Soft Edge to utilize their impressive online advocacy platform, Congress Plus, as a means to help enact change in federal policies.

Congress Plus collectively allows us all to impact kidney and rare disease legislation right at our fingertips. In the coming weeks, ASF will create branded advocacy pages allowing members of our community to send customizable messages to lawmakers and their staff with only a few button clicks.

If you are interested in receiving email updates about online advocacy opportunities, please email ASF Staff with your full name, preferred email address, state of residence, and zip code. Use the subject line “Alport Advocacy.”

ASF is grateful to 2024 Patient Advocacy sponsor, Travere Therapeutics, for helping fund ASF’s advocacy platform, which elevates our community’s voice on matters that affect our lives.

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