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October 2022 Newsletter

5 Young Patients Receive ASF Funding

Alport Syndrome Foundation (ASF) is honored to congratulate the winners of the 2022 Paul Silver Enrichment Award:

Alex – age 21, Alabama
Award will be used to support a rocket launch, as part of The University of Alabama in Huntsville (UAH) Space and Rocket Club.

Deanna – age 22, Florida
Award will be used to support editing and publication fees related to her memoir.

Nolan – age 18, North Carolina
Award will be used to support college tuition.

Zachary – age 17, Pennsylvania
Award will be used to purchase hearing assistive technology.

Chuhan – age 21, Massachusetts
Award will be used to support MD/PhD program application fees.

Additionally, we are pleased to announce our 2022 winners have collectively received the highest funding total since the award was first offered in 2012.

This annual financial award is provided by the Silver Family and ASF in memory of patient Paul Silver in order to help young patients achieve personal goals.

ASF Welcomes New Board Member

The ASF Board of Directors is honored to welcome a new member to help lead its efforts.

Stephen Malach, MD, is a practicing psychiatrist and psychoanalyst in New York, having received a BA in psychology from Johns Hopkins University and his MD from SUNY Downstate College of Medicine.

Stephen has X-linked Alport syndrome with hearing loss and is raising a child with Alport syndrome. Growing up with a mother who survived 23 years on dialysis and 24 years with a transplanted kidney, Stephen personally understands the challenges faced by Alport syndrome patients. His own kidney function was stable until 2020, and he was fortunate to receive a preemptive kidney transplant in May 2022. Stephen’s particular area of interest is in helping empower individuals living with Alport syndrome, improving the mental health of patients, and moving the science of treatment forward.

On his new addition to the ASF Board, Stephen noted, “For the last several years, being more active with ASF has helped me tremendously. It has made me more confident in advocating for myself and for my daughter. I would like to help others to advocate for themselves. I am extremely interested in advocating for Alport research for the whole community and for my daughter. The more we do now, the more it will help the next generation.”

Male Patients: Connect & Share Your Experiences

Tuesday, November 15, 2022
60-minute Direct Connect conversation
4pm Pacific / 5pm Mountain / 6pm Central / 7pm Eastern Time

Due to the success of the 2022 Alport Connect event discussion focused on men’s health, ASF is inviting males (age 18+) to share their experiences and concerns.

In this virtual session, male patients will have the opportunity to discuss the latest treatment options at all stages of disease, dialysis and transplant experiences, hearing loss, eye abnormalities, concerns for other affected family members, and more. All Alport-related topics are on the table.

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

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

Expanded Eye Research Articles, Summaries

ASF extends gratitude to Sarah Pike, BA (Keck School of Medicine of the University of Southern California, MD Candidate, Class of 2024), for volunteering her time to collect, organize, and summarize published articles focused on the ocular features and complications associated with Alport syndrome.

Thanks to Sarah’s efforts, Alport patients and family members can read layman’s summaries of articles previously unavailable on the ASF website.

Help Support ASF Into the Future

Our 4-week Annual Campaign runs October 24th – November 19th

This month-long fundraising effort directly supports:

  • research
  • educational resources for patients/families
  • keeping ASF’s membership and programs free for everyone

During the Campaign, we will send one email per week with updates on our progress. We’ll share more details on how ASF funds are directed, plans for future efforts, ways to maximize your gift(s), and how you can support our efforts even if you are unable to contribute financially. This is the only time of year that you’ll hear from us multiple times in a month.

Thank you to all those who have already committed to be a volunteer 2022 Campaigner. You help us reach a wider audience for support and awareness. Interested in becoming a campaigner? Contact ASF Staff – your personalized online fundraising page can be made live in only a few minutes!

Deadline Approaching: Incomplete Patient Registry Enrollment Activations Will Be Purged

Deadline: Monday, October 31st

The week of October 17th, you may have received an email from [email protected] (remember to check your spam/junk box) with a reminder to complete your enrollment in the new Alport syndrome patient registry we created in partnership with National Kidney Foundation. If you started the process, but haven’t yet completed enrollment, you would have received this email reminder. Your initial activation is good through October 31st, and you can use the information in the message from [email protected] to activate your account. If you decide not to complete your account setup, the information you entered before will be deleted in the platform. You can return to the registry anytime to start again.

The process takes 30 minutes or less to complete. We realize the consent form is a lot of information to read in its entirety. It provides details about how your data is kept private and deidentified, not associated with your name or identifiable details on the back end.

Enrollment in the NKF Patient Registry – Alport Syndrome is the single most important thing we can do as patients to drive and support research and clinical studies. No one can study what they don’t know! We encourage you to have your voice and your symptoms documented for research! Thanks for considering. If you have questions, feel free to contact [email protected]. If you run into any troubles completing your enrollment, please contact: [email protected].

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