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Guest Speakers Announced for Alport Connect 2023

Alport Connect 2023 – our first in-person gathering in 3 years – will be here before we know it. To give you a taste of what we are preparing for this October, we are delighted to announce some of our confirmed speakers:

  • Caitlin Carter, MD:ASF Medical Advisory Committee (MAC) member; Associate Clinical Professor of Pediatrics, University of California San Diego School of Medicine; and Clinical Director of the Division of Nephrology, Rady Children’s Hospital, San Diego
  • Jeff Miner, PhD, FASN: ASF Scientific Advisory Research Network member and Eduardo Slatopolsky Professor of Medicine in Nephrology, Washington University School of Medicine
  • Anjay Rastogi, MD, PhD: ASF MAC member and Professor and Clinical Chief Director, UCLA CORE Kidney Program, Division of Nephrology, Department of Medicine, David Geffen School of Medicine at UCLA
  • Mary-Beth Roberts, MS, CGC: General/pediatric genetic counselor at the Renal Genetics Clinic at Cleveland Clinic
  • Alexander Wiseman, MD: Executive Director of Kidney Transplantation at the Centura Transplant Institute
  • Jennifer Yee, MD, PhD:Pediatric nephrologist and research scientist at the University of Michigan, Co-Investigator for the Alport Syndrome Natural History Study at NEPTUNE

Saturday, October 7th, will begin with a keynote address focused on hopeful advances in Alport syndrome research. Our “Living With and Managing All Aspects of Alport Syndrome” panel and audience Q&A will include experts in nephrology, audiology, ophthalmology, genetics, and transplant. More panels will be announced as the event nears.

As a reminder, the meeting will be held October 7-8, 2023. Saturday will occur at the University of San Diego and Sunday will be held at a local beach. Tickets for Saturday are free but must be reserved in advance; Sunday does not require a ticket. View full details on our event website.

We look forward to seeing you for two days of learning and social connection!

ASF Welcomes Dr. Moumita Barua as an Advisor

ASF is excited to welcome Moumita Barua, MD, to our Scientific Advisory Research Network (SARN).

Dr. Barua, a prior ASF Research Program funding recipient, is a Clinician Scientist in the Division of Nephrology at Toronto General Hospital in Canada. The focus of her research lab is to establish a biologic mechanism linking gene variants to the development of chronic kidney disease, with a focus on glomerular disorders such as Alport syndrome. Dr. Barua has given numerous talks on Alport syndrome including at the International Alport Syndrome Workshop, the National Kidney Foundation Spring Clinical meeting, the American Society of Nephrology Kidney Week meeting, and at the International Podocyte Conference.

You can read Dr. Barua’s full biography on our SARN webpage.


Creative Fundraiser Supports ASF

Earlier this month, Taylor, an Alport patient and mother of three young sons diagnosed with Alport syndrome, held a bingo event with a local fire hall to support ASF and build awareness.

“When finding out about our diagnosis, I felt helpless and the only thing that made me feel like I could do something for my kids and their future was to raise money for Alport Syndrome Foundation,” notes Taylor. “They have been a great resource for me since diagnosis.”

The event, held on May 7th, was a huge success and raised over $8,600 to support ASF.

“I was nervous to do a fundraising event because I had never done anything like this before, but once I planned it, people were more than willing to help. Money and prize donations started rolling in and that’s when I knew we were going to have a successful event. I have no regrets, just an immense sense of accomplishment, which aided in my acceptance of my sons’ diagnoses this year,” said Taylor.

Want to learn more about this event or discuss how to plan your own? Email ASF Staff.

Alport Clinical Trial Updates

On May 24th, Eloxx Pharmaceuticals announced the company intends to advance ELX-02 into a pivotal trial for the treatment of Alport syndrome with nonsense mutations, following a significant reduction in urine protein creatinine ratio (UPCR) from baseline in one patient enrolled in its Phase 2 clinical study.

On May 10th, Reata Pharmaceuticals announced the termination of the EAGLE study. EAGLE was an extended access study assessing the long-term safety and tolerability of bardoxolone methyl. Click here to read a statement provided by Reata to ASF and the larger Alport syndrome community. Questions can be directed to Reata via their call center at (800) 314-3934.

On May 9th, Chinook Therapeutics announced the completion of enrollment of the Alport syndrome cohort of the AFFINITY trial. The study is not currently enrolling new patients.

To learn more about ongoing clinical trials, please visit our website.

Thank You, Janine, For Enhancing ASF’s Efforts

Long-time volunteer Janine Reed has decided to take a step back from her role at Alport Syndrome Foundation to prioritize her health and other personal goals. With that said, on behalf of the entire Alport syndrome community, ASF would like to extend heartfelt gratitude and appreciation to Janine for all her years of unwavering service to the Foundation and to kidney patients in general.

Janine Reed became a Registered Nurse in 1974 and was diagnosed with X-linked Alport syndrome that same year. Before her retirement in 2015, she enjoyed a 45-year RN career, including 15 years as Director of Dialysis Services at Munson Dialysis Center in Traverse City, Michigan.

In her role on ASF’s Board of Directors from 2019-2022, Janine served as Chair of our Programs and Services Committee. Janine was one of the first administrators of our Facebook Support Group since its launch 8 years ago, has attended many ASF in-person and virtual events, and is a familiar face to many within the Alport community. Janine plans to join us in person for Alport Connect 2023 in San Diego and hopefully for many other patient events in the future.

“It’s tough to overstate what Janine has contributed to ASF,” notes ASF Executive Director, Lisa Bonebrake. “With endless energy and empathy, Janine has served our community with knowledge and kindness for many years. I am so grateful to have worked side by side with her.”

In this brief letter, Janine reflects on her years of service and shares her confidence in ASF’s future.

Thank you to our Alport Connect 2023 sponsors:

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