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September 2022 Newsletter

Alport Patients and Experts Convene in Calgary

On September 7, 2022, the International Workshop on Alport Syndrome brought together all stakeholders in our rare disease: researchers, clinicians, patients, and pharmaceutical industry. Hosted in Calgary, Canada, as a pre-congress meeting of the annual International Pediatric Nephrology Association (IPNA) conference, the meeting was both informative and hopeful. Presentations on a wide variety of topics were shared, including updated recommended treatment guidelines, new advancements in research, and the status of patient registries internationally. The meeting concluded with patients from around the world providing their perspectives on what was learned and gained.

ASF was represented at the Workshop by a board member, staff member, volunteers, and members of both our Medical Advisory Committee and Scientific Advisory Research Network.

My experience at the Alport International Workshop in Calgary was remarkable. Not only did I get to meet and greet the most knowledgeable Alport syndrome clinicians in the world, I also got to hear about the latest science, trials, and pharmaceutical interests in addressing Alport. Lastly, the experience of meeting other patients was an emotional and deeply bonding experience. I am so glad I came and am looking forward to continuing to be a part of this community. – Kimiya Bunger, patient/caregiver/ASF volunteer

Groundbreaking Alport Syndrome Hearing Loss Research

One fascinating presentation at the 2022 International Workshop on Alport Syndrome featured new findings about the cause of hearing loss in our disease. Dr. Felipe Santos shared his discoveries from an innovative research project funded by ASF in 2021.

The findings indicate that structural changes in a specific part of the inner ear, called the organ of Corti, corresponded to patients who experienced moderate to severe hearing loss. This observation, along with other physical changes within the cochlea, were present in temporal ear bones of Alport syndrome patients examined in this study. What was found in the temporal ear bones of human patients was not mirrored in mice with Alport syndrome.

This critical study has created a new path for additional studies that can help us better understand and treat hearing loss in Alport syndrome. The ASF website will be updated soon with a formal summary of Dr. Santos’ findings. For information about planning to participate in donating temporal ear bones as anatomical gifts to advance research, visit our Hearing Loss Research page.


Separation of the organ of Corti from the basilar membrane.

Mental Health Questions and Concerns

October 10th is World Mental Health Day. It’s a great time to gather virtually to discuss and address the unique mental and emotional health challenges we experience in living with Alport syndrome. ASF Staff and Emerging Leadership Council members will also be joined by an Alport patient who is a licensed mental health professional. Your experiences and insights are important – please join us!

Monday, October 10, 2022

60-minute Direct Connect conversation

2:00pm Pacific / 3:00pm Mountain / 4:00pm Central / 5:00pm Eastern

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

The event is free but requires pre-registration at the link below:

Seeking Volunteers: Your Efforts Sustain ASF

Our 2022 Annual Campaign is around the corner:

October 24th through November 19th

To help us reach this year’s ambitious goal of $175,000, we are seeking a minimum of 30 individual campaigners.

By sharing your personal story with your network of friends, family, and colleagues, and asking for their support of the Annual Campaign, Alport awareness extends to individuals we would never reach! We’ll provide all the instructions you need to get your fully customizable online donation page up and running in a matter of minutes! Gifts of all sizes are valuable and meaningful. Together, it all adds up to positive change for individuals and families living with Alport syndrome.

Thanks to the past generosity of our 2021 campaigners and donors, together, we have seen tremendous progress since this time last year. Examples include the launch of our new, state-of-the-art Patient Registry, the start of our new Natural History Story (NEPTUNE), the success of our virtual Alport Connect meeting, and the many new, no-charge patient resources we have created for the patient community.

Trial Open to Alport Patients: New Presentation, Q&A

ASF recently invited River 3 Renal Corp. to provide information about R3R01-ASFSGS-201, a phase 2 clinical trial open to Alport patients that is studying an investigational medication called R3R01. R3R01 has the potential to benefit patients with Alport syndrome and other glomerular diseases by preserving or improving kidney function and reducing the amount of protein in the urine.

Click the video preview above to watch a presentation about the study from Guido Magni, MD, PhD, followed by a Q&A session moderated by ASF’s Patient Engagement Coordinator, Afton DeLucca.

To learn more about R3R01-ASFSGS-201, including a list of active study sites, visit the ASF website.