Key Takeaways From Alport Experts
ASF brought together several leading clinicians and researchers to share their expertise at our Alport Connect 2024 meeting in late July. For those unable to attend this year’s meeting, we want to share key takeaways from these presentations so that everyone can benefit.
Topics covered include adult and pediatric treatments, hearing loss, clinical trial considerations, genetics, preparation for advanced kidney disease, transplant, and more.
Young Adult Funding Opportunity: Deadline 10/25
Click the video arrow above to hear from 2023 recipient, Helen, who was able to take art classes and try new types of media. Click the “CC” button to activate closed captioning.
2024 Paul Silver Enrichment Award applications are open to U.S. Alport patients ages 18-24. Due 5 PM (applicant’s local time) on Friday, October 25th.
Since 2012, the annual Paul Silver Enrichment Award has provided more than $60,000 in funding to 42 young individuals living with Alport syndrome. The award was created in memory of Paul Silver, who received funding in college which allowed him to further his passion for filmmaking. ASF and the Silver Family continue this “pay it forward“ philosophy by helping young adults affected by Alport syndrome achieve personal interests and goals of their own.
Paul Silver’s mother, Joyce, recently met previous award winners for the first time. Joyce noted: What an emotional experience I had at the ASF Family Conference. I was able to meet seven of the past recipients of the Paul Silver Enrichment Award. I was so proud of these young people for what they have achieved and how they are giving back to the ASF community. They represent the fulfillment of a dream I had to honor the memory of my son and empower those, who like Paul, have Alport Syndrome, and give them encouragement. It is a joy to sponsor this award each year.
Seven past awardees were together at Alport Connect 2024 in Denver.
Top Row (L-R): Maddison, Liam, Thomas, and Alexander. Bottom Row (L-R): ASF Co-Founder Sharon Lagas, prior recipients Sarah, Gabrielle and Rachel, and Joyce Silver – mother of Paul for whom the award is named
ASF Needs Volunteers in October
Our 2024 Annual Campaign is October 8th – 31st. Volunteers willing to share their story to build awareness and support make all the difference! Funds raised through this annual effort make it possible for ASF to survive, thrive, and provide all of our programs and services for free. To learn more or to become a campaign volunteer, contact: [email protected]
ASF Alport Patient Registry – Help Us Reach 500!
THANK YOU to the 450 U.S. patients of all ages and stages of kidney disease enrolled in the ASF Alport Patient Registry. It’s the #1 way to support research and exploration of potential therapeutics and/or a cure. Our goal is to reach a total enrollment of 500 or more by the end of 2024. This brings us close to becoming the largest and most in-depth Alport patient registry in the world. Please consider helping us reach this goal. It’s free, voluntary, and designed to capture your real world experiences whether you are pre- or post-transplant.
For those already enrolled: please respond to registry reminders to update your lab results every 6 months, and log in any time to upload any new genetic tests or audiograms!
Join Us!
Walking a fine line between young adult independence and the need for parents/caregivers to advocate for their teen/young adult’s Alport-related care can be tricky. Connect with fellow patients and caregivers who’ve been there, and share your experiences! All those ages 18+ are welcome to attend.
Balancing Independence and Caregiving
October 16, 2024
7:30 PM ET / 4:30 PM PT
To encourage open conversation, Direct Connect events are live and not recorded.
Support Living Kidney Donors With Your Message
In our community of patients and families, kidney transplants are often part of the journey. A living donor’s decision to donate a kidney not only saves a life, but also saves our government a lot of money. Organ donation saves Medicare millions of dollars every year and cuts health care costs as much as two-thirds by reducing the need for expensive medical interventions to treat chronic illness such as end-stage-kidney disease.
Rather than putting roadblocks in the way of living organ donation, more individuals should be encouraged to become living donors, and their rights as donors to receive insurance and medical leave should be protected.
To learn more, and send an electronic message to your legislator to support the Living Donor Protection Act, click the link below and scroll down to “Take Action Now!”:
Hearing from those of us who have been or may be affected by this law is the most powerful way to help bring about change. Our voices are louder together. Thank you in advance for taking action to support our living donor heroes!
View our Newsletters and Announcements page for an archive of prior communications.
