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Join Us for Alport Connect 2023 in San Diego! Reserve Your Free Saturday Ticket(s) Now!

ASF’s annual patient and family meeting, Alport Connect, is returning in person for the first time in 3 years.

Alport Connect 2023 will not include virtual participation or be recorded.

Click the blue action button below to see event and lodging details.

Saturday, October 7th is a free ticketed event for indoor programming at the University of San Diego:

  • Saturday’s educational sessions will be held on the campus of the University of San Diego with three separate, simultaneous programs: Adults (ages 18+), Teens (ages 13-18), and Kids (ages 7-12). Note: The Teens program and Kids program are only for individuals with Alport syndrome. As space is limited, we cannot accommodate unaffected siblings or those under the age of 7 at this time.
  • Learn from leading adult and pediatric physicians, researchers, genetic counselors, fellow patients, and more.

Sunday, October 8th does not require a ticket and will be held at a local beach:

  • Bring your entire family for a morning of social interaction featuring beach games, breakfast snacks, and time to make lifelong connections with other patients and families.

Thank you to our generous event sponsors (listed at the end of this newsletter) who make this important event possible!

As space is limited for this event, we kindly request that only those assuredly planning to join us on Saturday, October 7th reserve a free ticket(s). Once Saturday reservations are at capacity, there will be no more indoor space available for others. If you reserve a space(s) for Saturday, October 7th, and your plans change, please email us at [email protected] so that others can join us. Thank you for understanding and respecting the needs of the entire community of patients and families.

New Alport Art Zine: Open Call for Patient Submissions

ASF is requesting patient submissions for the inaugural publication of Alport Odyssey, a zine exploring the Alport syndrome experience through the creative works of Alport patients. Zines are typically short-form collections of written and visual works centered around a theme or specific population.

We invite U.S. patients ages 12+, regardless of perceived artistic or creative abilities, to share their lived experiences with Alport syndrome through reflections on diagnosis, treatment, hearing loss, kidney failure, or a vision of what the future holds.

Submissions may be written and/or visual such as a photograph, drawing, painting, collage, poem, or other artistic medium.

ASF plans on producing virtual and print editions of the zine.

The deadline to submit completed works is 11:59pm Eastern Time on Sunday, April 30, 2023.

To learn more about Alport Odyssey, eligibility requirements, and submission details, visit our Zine page.

Board of Directors & Leadership Council Expansion

We are pleased to announce the addition of Amy Rhodes to the ASF Board of Directors. Amy previously served on the Emerging Leadership Council for the past year. She and her oldest son were diagnosed in 2021. It is Amy’s goal to leverage her experience and education as an Elementary Education teacher to ensure families dealing with an Alport diagnosis have the information, support, and resources necessary to take action on their diagnosis and maintain a positive outlook for the future.

John Watson is the latest addition to the Emerging Leadership Council. Despite a family history of kidney disease, John was the first individual to be correctly diagnosed with Alport syndrome. He and his wife, Madeline, who reside in Denver, Colorado, recently welcomed their first son, Wesley. John hopes to serve as a resource for others who are diagnosed in adulthood and looking to grow their families.

Join Us: Upcoming Transplant Discussion

As part of Donate Life Month, join fellow Alport patients, kidney transplant recipients, and living kidney donors for a 60-minute moderated discussion about all things pre- and post-transplant.

Tuesday, April 11, 2023

Kidney Transplant

5:00pm Pacific / 6:00pm Mountain / 7:00pm Central / 8:00pm Eastern

Click here to register.

To encourage open conversation, Direct Connect events are live and not recorded. Direct Connect meetings are specifically for patients and family members ages 18+.

First Alport Patients Receive Novel ELX-02 Study Drug

On February 27th, Eloxx Pharmaceuticals announced that the first patients have now received the experimental drug in its phase 2 study of ELX-02 for the treatment of Alport syndrome in qualifying patients with nonsense mutations. Patients will receive doses for 2 months with a 3-month follow-up. In addition to the primary endpoint of safety, the key secondary efficacy endpoint of proteinuria will be measured every 2 weeks. Top-line results are expected in the first half of 2023. Click here to read the full press release.

Thank you to our Alport Connect 2023 event sponsors:

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