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November 2021 Newsletter

Thank You for Sustaining ASF!

In a wonderful demonstration of generosity from the community of patients, family members, friends, and partners, ASF’s 2021 Annual Campaign raised $182,934 – exceeding our goal by over $57,000.

Meeting and surpassing our goal would not have been possible without dedicated campaigners and donors who were inspired to participate. We saw your numerous personalized pages and social media posts, and we appreciate all of you.

Thank you for sharing your stories to raise awareness and funds, and for your confidence in our efforts to bring valuable resources and research investment to the Alport syndrome community. ASF will provide a full Annual Campaign report early next year.

New Educational Resource by Patients for Patients

With the guidance of Medical Advisory Committee members, ASF’s Emerging Leadership Council is pleased to share a brand new, downloadable Patient Guide: By Patients for Patients.

This new resource includes an up-to-date overview of diagnosis, disease symptoms, current treatment recommendations based on research, types of health care providers that may be helpful, and more. ASF is grateful to Natera and to Sanofi Genzyme, the 2021 sponsors of the Emerging Leadership Council’s efforts. Their support was critical in helping make this new Patient Guide possible.

Click here to view the new Patient Guide.

$2.25M NIDDK Grant Awarded to Alport Researcher

Dr. Jeffrey Miner, a member of ASF’s Scientific Advisory Research Network, has been awarded a $2.25 million grant from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to study Alport syndrome.

Dr. Miner and his lab intend to use this grant to study the effects of small-molecule drugs, gene-editing therapy (CRISPR), and protein biochemistry in mouse models. It’s hoped that these state-of-the-art technologies will help the glomerular basement membrane (an essential part of kidney filtration) function more normally.

This research may also shed light on how far into kidney disease progression these types of therapies can be effective. If proven beneficial, the addition of this treatment option could significantly delay end-stage kidney disease and help guide future gene therapy treatments for Alport syndrome.

Click here to read the full press release.

Upcoming Patient Connection Opportunities

ASF is excited to offer two new opportunities for Alport patients to virtually connect with others in their age range to share their journeys, provide feedback about resources, and ask ASF Staff and volunteers questions! Both 60-minute events require free, pre-registration to attend.

Ages 18-35
Thursday, December 9, 2021
5pm Pacific / 8pm Eastern
Join fellow patients for a themed event, “Coping with Alport syndrome,” featuring members of ASF’s Emerging Leadership Council. Share and learn coping tips!

Learn More & Register

Ages 35-50
Tuesday, January 11, 2022
5pm Pacific / 8pm Eastern
Join patients and ASF Staff as we assess the unique needs of this demographic and brainstorm future resources to address gaps in care/support.

Learn More & Register

ASF Co-Founder Selected for FDA Collaborative Role

The U.S. Food and Drug Administration (FDA) in collaboration with the Clinical Trials Transformation Initiative, recently announced the expansion of the Patient Engagement Collaborative (PEC) to include 8 new members, including Sharon Lagas, Co-Founder and past President of Alport Syndrome Foundation.

Sharon noted, “I am deeply honored to have been selected and will work to bring the experiences and perspectives of the Alport Community, as well as my own, to the PEC.”

Launched in 2017, the PEC is composed of patient organizations and individual members who strategize improvements in patient engagement. New members were selected from a pool of 100+ applicants.

Help Us Plan the 2022 Alport Connect Event

As ASF’s Alport Connect event is our main opportunity to come together for the year, we would like to learn your preferences concerning the format of next year’s meeting.

The anonymous Alport Connect survey takes 4 minutes to complete.

Note: If we are safely able to hold an in-person gathering next summer, it would likely be held in the Midwestern United States, but this is subject to change.

Click here to provide your input!

Florida Athlete Supports TEAM ASF

Jeffrey Litt, MD, participated in IRONMAN Florida on November 6, 2021, with almost $3,000 in fundraising proceeds directed toward Alport Syndrome Foundation’s TEAM ASF. Dr. Litt, who has immediate family affected by Alport syndrome, successfully completed the physically demanding swimming, cycling, and running competition in just over 15 hours.

Click here to read comments from Dr. Litt and to see a post-race photo!

Organizing or participating in a competitive event in the coming months? Join TEAM ASF and your event can raise critical funds and awareness. Contact ASF to learn more.

Shop Online This Holiday Season to Support ASF

  • Did you know when you shop at http://smile.amazon.com/ch/20-8237159, AmazonSmile donates to Alport Syndrome Foundation?With major online sales just around the corner, simply choose Alport Syndrome Foundation as your charity of choice and you’ll support us when purchasing holiday items for the ones you love (including yourself)!
  • GoodShop is an online shopping mall that donates a percentage of your purchase to your cause-of-choice when you shop thousands of top retailers including Apple, Kohl’s, Travelocity, Macy’s, and Best Buy. You can also find numerous discounts and money-saving coupons. Simply register with Goodshop and choose Alport Syndrome Foundation to shop, save, and support!
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