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February 2024 Newsletter

ASF Welcomes New Scientific Research Advisor

ASF is excited to welcome Mary-Beth Roberts, MS, CGC, to our Scientific Advisory Research Network (SARN).

Ms. Roberts is a general/pediatric genetic counselor specializing in kidney (renal) genetics at Cleveland Clinic in Cleveland, Ohio. Over the years, she has provided her invaluable guidance in the creation of ASF resources, such as the Family Planning Guide, and most recently educated Alport Connect 2023 attendees about Alport inheritance patterns, gene mutations, and the importance of genetic testing.

You can read Mary-Beth’s full biography on our SARN webpage.

Join Us During Alport Awareness Month

In honor of Alport Awareness Month in March, we will be hosting a Direct Connect conversation focused on ways patients can participate in Alport research. ASF’s Research Director, B. Andrรฉ Weinstock, PhD, MSAS, will be present to answer attendee inquiries.

Research Opportunities for Alport Patients

Tuesday, March 5, 2024

4:00pm Pacific / 7:00pm Eastern

Click here to register.

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

We would also like to thank the many patients who joined our February 20th Direct Connect and made our first meeting of the year an overwhelming success! We look forward to seeing more new and returning guests as we continue these meetings throughout the year.

New Ocular Research Summaries

We are happy to share that three new research articles from late 2023 and early 2024 have been added to the Eye Abnormalities and Research portion of our website.

Our sincere thanks goes out to Sarah Pike, BA (Keck School of Medicine of the University of Southern California, MD Candidate, Class of 2024) for providing additional layman’s summaries for our community. Our website now includes over a dozen article summaries thanks to Sarah’s efforts.

Additionally, our ocular-centric page contains a 60-minute educational video about Alport eye conditions and a downloadable/printable tip sheet of questions patients can bring to their next ophthalmology appointment.

2023 Annual Report: A Year in Review

ASF is pleased to share our 2023 Annual Report, which provides insights on accomplishments, organizational reach and growth, and how funding was directed toward our mission of improving the lives of all those living with our rare disease.

We extend heartfelt gratitude to the 807 donors last year who contributed gifts to support our efforts and are humbled by the 578 new individuals who became free members of our ASF community.

Click here to view this year’s full report, as well as reports from previous years.

Rare Disease Day 2024

We look forward to celebrating Rare Disease Day on the โ€œrarestโ€ day of the year, February 29th.

Alport syndrome is just one of the 6,000+ identified rare diseases that affect a combined 300 million individuals worldwide.

This year, ASF staff members will be participating in interactive virtual events hosted by the U.S. FDA and National Institutes of Health. You can learn various ways to get involved by visiting the Rare Disease Day website.

While Rare Disease Day is only one calendar day, our work to spread Alport syndrome awareness and education continues year-round.

Next month, as part of Alport Awareness Month, we’ll share numerous ways patients’ journeys can inform research and shape future care!ย 

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