Alport Connect: Success in San Diego!
Alport Connect 2023 was our largest in-person gathering to date! We are grateful to share that 100% of event survey respondents “would recommend this Alport Connect experience to other patients and families.” Thank you to our attendees, event sponsors, guest speakers, and volunteers for making this memorable event possible.
- Alport Connect will once again return in person in 2024.Additional details will be shared once our location and dates are finalized.
- Our two keynote addresses concerning research updates and managing aspects of Alport care were professionally recorded. We hope to share the finalized, closed-captioned recordings on our YouTube channelin the coming weeks.
Alport Connect In YOUR Words:
- “This experience was so empowering!”
- “Wide array of knowledgeable and dynamic speakers.”
- “Attending Alport Connect is hopeful, inspiring, and informative. Community matters!”
- “I learned that I need to be more proactive about my own care and this meeting helped me understand how to do that.”
- “It was intentional and impactful with the information on how to handle and tackle this disease. Made us feel supported and not alone.”
Questions About Treatment Meds?
Due to time constraints at Alport Connect, our planned “Pre- and Post-Transplant Medications Overview” session was unable to occur. As questions about medications are so frequently raised, we’re pleased to announce ASF Medical Advisory Committee member Dr. Caitlin Carter and transplant nephrologist Dr. Alexander Wiseman have graciously agreed to participate in a recorded, moderated Q&A on this topic.
We plan on filming our discussion in early December and sharing the edited video with the Alport community.
Please submit your questions about adult and pediatric Alport treatment medications and/or kidney transplant medications to ASF by email with the subject line “Treatment Questions.”
Patient Family Throws Nashville Bash for ASF
2023 marks the 10th anniversary of John Dunlap’s successful kidney transplant. He has overcome many of the challenges that our rare disease can bring including hearing loss, eye conditions, aortic aneurysm, and kidney failure. John has survived, thrived, and with his wife, Trish, is raising three wonderful children, one of whom also has Alport syndrome.
“I appreciate the education, support, and research investment made possible through ASF,” John notes, “so I wanted to do something big, something I can do to give back and support my fellow patients and families living with Alport syndrome.”
And he did go big! John and his family and friends spent much of the year organizing a creative fundraising and friend-raising event in Nashville, Tennessee. On September 21st, many of John’s colleagues and friends gathered for a daytime paintball game and an evening casino night at a great downtown venue complete with Vegas-style casino tables, live music, a magician, games, and more.
John and his event organizing team (pictured bottom left) raised enough funds to direct $65,000 to ASF!
Amazingly, the whole team is on board to repeat the event next year on September 26, 2024 in Nashville. Thank You, Music City Kidney Fundraiser!
Research: Indicators of Alport Disease Progression
In a new Kidney International Reports research article, Rhode et al. looked at clinical indicators (or biomarkers) that provide a more accurate picture of Alport syndrome renal disease progression.
These initial findings, shown in pediatric canine and human Alport patients, key in on novel urinary biomarker molecules ColXIII, HABP2, and C4BP to detect the progression of kidney damage. Armed with this knowledge, clinical trials will be better equipped to more accurately and time-efficiently assess whether a study drug is effective for treating Alport syndrome.
We Can’t Do This Without You
Our 2023 Annual Campaign ends November 5th. We’re more than halfway toward reaching our ambitious $250,000 goal. We can’t get there without you.
The Annual Campaign is our primary source of income that allows us to do what we do: invest in research, educate patients and families, build awareness with medical professionals, bring the patient voice to clinical trial development, and more.
Thanks to a generous anonymous donor, our matching gift opportunity is still available. You can DOUBLE the impact of your gift this year!
Thank you to all those who have already made a gift to the campaign. We value and appreciate your support. Huge thanks to those who have stepped forward to become campaign volunteers! You are expanding our network of awareness and support.
If you are interested in volunteering for this year’s campaign, please email ASF at [email protected].
We are grateful to the Alport Connect 2023 Sponsors for supporting a memorable weekend of education and community interaction in San Diego:
View our Newsletters and Announcements page for an archive of prior communications.