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Emerging Leadership Council Welcomes New Members

ASF is pleased to announce the addition of two new members to the Emerging Leadership Council (ELC), TJ Mayfield and Sarah Kraut, bringing the group to a total of 10 members.

TJ and Sarah are both in their 20s and post-renal transplant. TJ serves as the current Executive Director of the Mississippi Kidney Foundation, overseeing day-to-day operations, fundraising, and advocacy. Sarah, a college student who resides in Texas, has volunteered for ASF for close to 7 years and was a recipient of the Paul Silver Enrichment Award.

The ELC was established in 2020. This group of driven, inspirational patients in their 20s and 30s meet regularly to ensure the voice of those in that age range is well-represented in the foundation’s decision-making. Their ongoing efforts help to develop the next set of leaders to sustain ASF into the future.

Patients in their 20s and 30s are encouraged to contact the ELC to share their stories, learn about relevant ASF resources, and become further engaged with the Alport community.

New to ASF? Join Us for a Virtual Discussion!

If you’re new to the Alport community or are now feeling ready to connect with others, please join our upcoming Direct Connect meeting! This will be an open discussion, covering your questions and concerns, while giving you a chance to meet others with our rare disease. We’d also love to hear any feedback you may have about our programs and services that you’ve used since becoming a member.

Thursday, February 16, 2023

60-minute Direct Connect conversation

5:00pm Pacific / 6:00pm Mountain / 7:00pm Central / 8:00pm Eastern

To encourage open conversation, Direct Connect events are live and not recorded. Direct Connect meetings are specifically for patients and family members.

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

Alport Researcher Spotlight: Dr. Rachel Lennon

Click the “CC” Button for closed captioning

ASF recently had the pleasure of conducting a virtual interview with Dr. Rachel Lennon of our Scientific Advisory Research Network. In this 15-minute, closed-captioned recording, Dr. Lennon shares her early days of Alport research, the impact of funding she received from ASF, what Alport patients and families should know about the current state of research, and more.

2022 in Review

ASF is proud to share our 2022 Annual Report, which focuses on what we have accomplished over the past year, the reach and growth of the Foundation, and how funding received has been directed toward our mission of improving the lives of those living with Alport syndrome.

We also want to thank the 874 donors that contributed gifts to support our efforts and the 249 volunteers that invested more than 906 hours to accomplish our goals in 2022.

Our community continues to grow and to engage with ASF in ways that are making a difference for us all. Our board of directors and staff are grateful and remain focused and determined in our mission.

Click here to view the full report.

New Alport Clinical Trials Overview, Site Locations

Earlier this month, the Clinical Trials page on the ASF website was updated to include a collapsible table which provides a side-by-side overview of active clinical trials open to Alport patients. After a quick review of basic eligibility criteria, those interested in additional study details can read extended trial summaries further down the page. Our new table and corresponding summaries will be updated as new information becomes available.

One trial featured on our new table is the R3R01- ASFSGS-201 Study. This phase 2 clinical trial is testing 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.

Earlier this month, R3R01 study sponsor River 3 Renal Corp., announced 5 new site locations: One in the United States (University of Michigan Medical School) and four international sites across the U.K., Belgium, and the Netherlands. To learn more about this study, including a full list of actively recruiting locations and their respective contact details, visit our website.

Stay in Touch with ASF Throughout 2023

As part of 2022 year-end cleanup, ASF meticulously reviewed our email contact list of patients, family members, nephrologists, and other medical/industry professionals. As we prepare for another year of monthly e-newsletters and other critical communications, we encourage all those who would like to update their primary email address to contact ASF Staff. In the coming weeks, ASF will reach out by alternate means, if possible, to those with repeatedly bouncing email addresses.

Additionally, if others in your family or social network would like to receive our periodic email updates, they are encouraged to sign up for free membership.

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