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December 2021 Newsletter

ASF Provides Awards to 3 Young Patients

Congratulations to ASF’s 2021 Paul Silver Enrichment Award winners:

Tara – age 22 (top left)

Anya – age 19 (top right)

Lia – age 16 (bottom left)

This annual financial award is provided by the Silver Family and Alport Syndrome Foundation in memory of patient Paul Silver.

The Enrichment Award was created in his memory to help other young people achieve their personal goals.

Learn more about the award and how this year’s recipients plan on using their funding by visiting this page.

Get to Know ASF’s Emerging Leadership Council

In this new 4-minute video, members of ASF’s Emerging Leadership Council share aspects of daily routines and how they manage their Alport diagnosis.

Note: Closed captioning is available by clicking the “CC” button.

FDA Advisory Committee Meeting on Bardoxolone

On December 8th, the FDA’s Cardiovascular and Renal Drugs Advisory Committee met to discuss the new drug application (NDA) 215484, for bardoxolone methyl, submitted by Reata Pharmaceuticals, Inc. The proposed indication of bardoxolone is to slow the progression of chronic kidney disease caused by Alport syndrome.

After review of data presented by the study sponsor, and oral testimonies from patients and medical professionals, the 13-member Advisory Committee recommended the FDA not approve bardoxolone methyl at this time.

Reata Pharmaceuticals issued a follow up press release, including remarks from President and CEO, Warren Huff, on December 8th. Click here to read remarks from ASF Executive Director Lisa Bonebrake concerning the Committee’s recommendation.

A final decision by the FDA is expected by the end of February 2022.

Kidney Transplant: New Findings

According to the authors of “Racial disparities and trends in kidney transplant outcomes in patients with Alport syndrome,” published in Clinical Nephrology, their study is the first to evaluate racial disparities in the age at transplant and transplant outcomes for U.S. Alport syndrome patients.

Data from the Scientific Registry of Transplant Recipients helped the authors, including Dr. Clifford Kashtan of ASF’s Medical Advisory Committee, assess information on 3,794 Alport kidney recipients of varying ethnicities between 1987 and 2017.

While the proportion of pre-emptive transplants and living donor transplants increased over the study assessment period, significant health-related disparities were observed. “The age at transplant increased over time for Whites but not Black and Hispanic patients,” concluded the authors. Additionally, racial/ethnic minorities with Alport syndrome should be viewed as “high risk” for rapid progression and “should be followed closely with early institution of ACEi/ARB therapy with or without proteinuria/microalbuminuria.”

Click here to read a layman’s summary of the study findings generously provided by Dr. Kashtan.

Prep Guide For Transplant Surgery

Through virtual meetings in Fall 2021, ASF brought together Alport patients of various ages and lifestyles who received the Gift of Life through kidney transplant.

In an effort to help other Alport patients prepare for renal transplant, ASF is working closely with these patient volunteers to create a “Things Transplant Patients Wish They Knew Before Surgery” guide, which we plan to share in early 2022.

If you are a kidney transplant recipient and would like to assist by providing input for this guide, please email ASF Staff.

Alport Direct Connect (Ages 35-50): Jan. 11th

Tuesday, January 11, 2022

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

For the first time ever, ASF will bring together patients in this age range for a 60-minute informal discussion moderated by members of ASF Board and Staff. We want to learn about your unique experiences and challenges in order to best serve this community in the future.

Start 2022 by virtually meeting other patients who share similar life circumstances!

Click here to register.

ASF Top 5 Goals Reached in 2021

Click here to view our Top 5 completed goals!

ASF will provide a full digital report outlining 2021 funding and projects in early 2022. THANK YOU for joining the ASF community, for staying engaged, and for supporting our important work.