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March 2022 Newsletter

New Volunteer and Research Opportunities for Patients

During Alport Awareness Month, we are highlighting new and ongoing opportunities for patients to directly participate in research, awareness, and advocacy. All experience levels are welcome. Check it out!

Want to interact with other members of the Alport community? Advise ASF on projects? Help improve our website content? Share a special skill in support of Alport awareness? Organize an event? Click below to learn about these opportunities and more!

Interested in assisting laboratory research from your own home? Supporting a major new research project by sharing some info and doing a saliva test? Viewing some mouse tissue slides from your home computer? Click below to learn about these projects and others!

THANK YOU to Chinook Therapeutics – Sponsor of Alport Awareness Month 2022!

Alport Researcher Awarded $1.49M to Study Genetics

Dr. Ron Korstanje, a member of ASF’s Scientific Advisory Research Network, leads a research team at The Jackson Laboratory recently awarded a $1.49M grant from the National Institute of Diabetes and Digestive and Kidney Disease to study Alport syndrome genetics. The project focuses on identifying modifier genes affecting the severity of disease and age of onset. This grant allows Dr. Korstanje (pictured at left) to expand the work he began with an initial 2019 ASF award of $125,000.

The project, which will study both mouse and human models, is a collaboration with Dr. Laith Al-Rabadi (pictured at right). Dr. Al-Rabadi, a clinician and researcher at the University of Utah who also serves on ASF’s Medical Advisory Committee, will test in human patients for the candidate genes that Dr. Kostanje and his team identify in the mouse models.

Click here to read the full press release.

Preparing for Kidney Transplant: Tips from Patients

A group of Alport syndrome kidney transplant recipients recently gathered for a series of ASF-hosted virtual meetings to discuss shared experiences and identify gaps in current care. In all, 25 patients of varying ages and backgrounds volunteered to help ASF prepare a new document outlining tips, talking points, and questions for patients to ask of their transplant teams in preparation for surgery and recovery.

Click here to view “Things Patients Wish They Knew Before Transplant Surgery” document prepared by patients for patients.

We hope this resource reduces the number of “unknowns” by sharing insights from others who have gone through this process.

Meet some of these transplant patients and join us:

Sunday, April 10th at 4:30pm Pacific / 7:30pm Eastern

60-minute informal Direct Connect discussion about planning for transplant and recovery.

Patient-Led ASF Advisory Group Expands

We are pleased to announce the addition of two new members to the Emerging Leadership Council (ELC): Amy Rhodes (pictured at left) and Maddison Martin (right).

The ELC was established in 2021 to help advise ASF on the needs of patients in their 20s and 30s and to develop the next set of leaders to sustain ASF’s efforts into the future.

Learn more about Amy and Maddison on the ELC webpage.

Groundbreaking New Alport Research

Genetic nonsense mutations, which are found in some Alport syndrome patients, refer to instances where collagen protein only gets partially made in the human body and cannot be used for its intended purpose.

A study recently published in iScience outlines a new approach called readthrough therapy, which allows certain nonsense mutations to be bypassed so the full protein can be made. Lead author of the study, Kohei Omachi, Ph.D. (pictured), works with study co-author Dr. Jeffrey Miner (of ASF’s Scientific Advisory Research Network) at Washington University in St. Louis. This research has potential to lead to curative clinical trials for Alport syndrome patients who have this specific type of genetic mutation.

Joseph Lagas, Doctoral Candidate in Molecular Biology (Washington University in St. Louis), generously agreed to provide a layman’s summary of this Alport-centric research paper published in February 2022.

New U.S. and Int’l AFFINITY Clinical Trial Sites

Chinook Therapeutics’ AFFINITY study is a phase 2 clinical trial testing an investigational medication called atrasentan in those with Alport syndrome and other glomerular diseases.

New U.S. AFFINITY sites enrolling Alport patients include the University of Minnesota (Minneapolis, MN) and the Prolato Clinical Research Center (Houston, TX).

The following countries also include new study sites: Australia, Italy, South Korea, Spain, and the United Kingdom.

Click here to view a complete list of active AFFINITY Study sites and contact information.

For additional information on the AFFINITY Study, visit ASF’s Clinical Trials page.