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Author: stormbraindev

August 2024 Newsletter

Kidney Transplant Resource, Aortic Research Funding, and more!

26 August, 2024 / No Comments

Apply Today: Paul Silver Award

Apply Today: Paul Silver Award

05 August, 2024 / No Comments

July 2024 Newsletter

July 2024 Newsletter

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June 2024 Newsletter

June 2024 Newsletter

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Learn more about the 2024 Paul Silver Enrichment A

Learn more about the 2024 Paul Silver Enrichment Award, open to U.S. Alport patients ages 18-24, at the link in our bio! Applications are due October 25th.

”Hi, everyone, my name is Rachel. And I am a recipient of the 2023 Paul Silver Enrichment Award, and I was 23 years old when I applied. I applied because I was also in the midst at the time of applying to graduate programs in genetic counseling, and I knew that this would be a great resource for me to have as I knew I’d have upcoming tuition payments once I started a graduate program. So that’s what I’ve done with the funds so far, and it has been great for me to use those to pay for the first semester’s tuition so that I can focus more so on what I need to be figuring out before I start school and all the studying I need to be doing, that I can focus more on those types of things.”

Drs. Simon and Carter of ASF’s Medical Advisory

Drs. Simon and Carter of ASF’s Medical Advisory Committee discuss standard of care at #AlportConnectDenver!

We are ONE WEEK away from #AlportConnectDenver at

We are ONE WEEK away from #AlportConnectDenver at the Gaylord Rockies Resort & Convention Center! Due to some last-minute cancellations, extremely limited tickets remain and event registration will close tomorrow, Monday, July 22nd. See link in bio for ticket details. We are excited to bring together patients/families from across the country with medical professionals who have expertise in our rare disease and researchers! All event registrants will receive an email communication early this week with critical event details. After months of planning, we are thrilled to host a memorable weekend and are excited to see new and returning faces! 💜🏔️

In honor of #WorldKidneyDay and #AlportAwareness M

In honor of #WorldKidneyDay and #AlportAwareness Month, ASF is grateful to share a personal message to our community from @alyraisman, champion gymnast and kidney health advocate:

𝘈𝘭𝘱𝘰𝘳𝘵 𝘴𝘺𝘯𝘥𝘳𝘰𝘮𝘦 𝘩𝘢𝘴 𝘢𝘧𝘧𝘦𝘤𝘵𝘦𝘥 𝘮𝘺 𝘧𝘢𝘮𝘪𝘭𝘺 𝘧𝘰𝘳 𝘮𝘶𝘭𝘵𝘪𝘱𝘭𝘦 𝘨𝘦𝘯𝘦𝘳𝘢𝘵𝘪𝘰𝘯𝘴 𝘢𝘯𝘥 𝘐’𝘮 𝘱𝘢𝘴𝘴𝘪𝘰𝘯𝘢𝘵𝘦 𝘢𝘣𝘰𝘶𝘵 𝘳𝘢𝘪𝘴𝘪𝘯𝘨 𝘮𝘰𝘳𝘦 𝘢𝘸𝘢𝘳𝘦𝘯𝘦𝘴𝘴 𝘧𝘰𝘳 𝘣𝘦𝘵𝘵𝘦𝘳 𝘵𝘳𝘦𝘢𝘵𝘮𝘦𝘯𝘵 𝘰𝘱𝘵𝘪𝘰𝘯𝘴. 𝘛𝘩𝘳𝘰𝘶𝘨𝘩 𝘰𝘶𝘳 𝘰𝘸𝘯 𝘦𝘹𝘱𝘦𝘳𝘪𝘦𝘯𝘤𝘦𝘴, 𝘮𝘺 𝘧𝘢𝘮𝘪𝘭𝘺 𝘩𝘢𝘴 𝘭𝘦𝘢𝘳𝘯𝘦𝘥 𝘵𝘩𝘦 𝘪𝘮𝘱𝘰𝘳𝘵𝘢𝘯𝘤𝘦 𝘰𝘧 𝘱𝘢𝘵𝘪𝘦𝘯𝘵𝘴’ 𝘬𝘯𝘰𝘸𝘭𝘦𝘥𝘨𝘦 𝘢𝘯𝘥 𝘶𝘯𝘥𝘦𝘳𝘴𝘵𝘢𝘯𝘥𝘪𝘯𝘨 𝘰𝘧 𝘵𝘩𝘪𝘴 𝘥𝘪𝘴𝘦𝘢𝘴𝘦. 𝘐 𝘣𝘦𝘭𝘪𝘦𝘷𝘦 𝘪𝘵’𝘴 𝘦𝘴𝘴𝘦𝘯𝘵𝘪𝘢𝘭 𝘧𝘰𝘳 𝘱𝘢𝘵𝘪𝘦𝘯𝘵𝘴 𝘵𝘰 𝘧𝘦𝘦𝘭 𝘦𝘮𝘱𝘰𝘸𝘦𝘳𝘦𝘥 𝘵𝘰 𝘴𝘱𝘦𝘢𝘬 𝘶𝘱 𝘢𝘯𝘥 𝘢𝘴𝘬 𝘲𝘶𝘦𝘴𝘵𝘪𝘰𝘯𝘴 𝘵𝘰 𝘭𝘦𝘢𝘳𝘯 𝘮𝘰𝘳𝘦.

𝘈𝘚𝘍 𝘩𝘢𝘴 𝘴𝘩𝘢𝘳𝘦𝘥 𝘸𝘪𝘵𝘩 𝘶𝘴 𝘵𝘩𝘢𝘵 𝘸𝘦 𝘦𝘢𝘤𝘩 𝘩𝘢𝘷𝘦 𝘶𝘯𝘪𝘲𝘶𝘦 𝘨𝘦𝘯𝘦𝘵𝘪𝘤 𝘱𝘳𝘰𝘧𝘪𝘭𝘦𝘴 𝘪𝘯𝘧𝘭𝘶𝘦𝘯𝘤𝘪𝘯𝘨 𝘵𝘩𝘦 𝘱𝘳𝘰𝘨𝘳𝘦𝘴𝘴𝘪𝘰𝘯 𝘰𝘧 𝘰𝘶𝘳 𝘴𝘺𝘮𝘱𝘵𝘰𝘮𝘴 𝘢𝘯𝘥 𝘨𝘦𝘯𝘦𝘵𝘪𝘤 𝘵𝘦𝘴𝘵𝘪𝘯𝘨 𝘢𝘯𝘥 𝘦𝘥𝘶𝘤𝘢𝘵𝘪𝘰𝘯 𝘢𝘳𝘦 𝘤𝘳𝘶𝘤𝘪𝘢𝘭 𝘵𝘰𝘰𝘭𝘴 𝘧𝘰𝘳 𝘥𝘰𝘤𝘵𝘰𝘳𝘴 𝘵𝘰 𝘣𝘦𝘴𝘵 𝘵𝘳𝘦𝘢𝘵 𝘈𝘭𝘱𝘰𝘳𝘵 𝘱𝘢𝘵𝘪𝘦𝘯𝘵𝘴. 𝘐’𝘮 𝘴𝘰 𝘨𝘳𝘢𝘵𝘦𝘧𝘶𝘭 𝘧𝘰𝘳 𝘈𝘚𝘍’𝘴 𝘦𝘧𝘧𝘰𝘳𝘵𝘴 𝘪𝘯 𝘢𝘥𝘷𝘢𝘯𝘤𝘪𝘯𝘨 𝘯𝘦𝘸 𝘳𝘦𝘴𝘦𝘢𝘳𝘤𝘩, 𝘦𝘥𝘶𝘤𝘢𝘵𝘪𝘰𝘯, 𝘢𝘯𝘥 𝘴𝘶𝘱𝘱𝘰𝘳𝘵𝘪𝘯𝘨 𝘵𝘩𝘪𝘴 𝘤𝘰𝘮𝘮𝘶𝘯𝘪𝘵𝘺. 𝘞𝘰𝘳𝘬𝘪𝘯𝘨 𝘵𝘰𝘨𝘦𝘵𝘩𝘦𝘳 𝘵𝘰 𝘩𝘦𝘭𝘱 𝘵𝘩𝘦𝘴𝘦 𝘦𝘧𝘧𝘰𝘳𝘵𝘴 𝘸𝘪𝘭𝘭 𝘩𝘰𝘱𝘦𝘧𝘶𝘭𝘭𝘺 𝘩𝘦𝘭𝘱 𝘪𝘮𝘱𝘳𝘰𝘷𝘦 𝘢𝘯𝘥 𝘴𝘢𝘷𝘦 𝘵𝘩𝘦 𝘭𝘪𝘷𝘦𝘴 𝘰𝘧 𝘱𝘢𝘵𝘪𝘦𝘯𝘵𝘴, 𝘧𝘳𝘪𝘦𝘯𝘥𝘴, 𝘢𝘯𝘥 𝘧𝘢𝘮𝘪𝘭𝘪𝘦𝘴 𝘪𝘮𝘱𝘢𝘤𝘵𝘦𝘥 𝘣𝘺 𝘈𝘭𝘱𝘰𝘳𝘵 𝘴𝘺𝘯𝘥𝘳𝘰𝘮𝘦.

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