Young Alport Adults: Send Us Your Applications!
The 2023 Paul Silver Enrichment Award is open to individuals in the U.S. ages 18-24 with an Alport syndrome diagnosis. Individual awards up to $3,000 will be offered by the Selection Committee to the applicant(s) who best meet the evaluation criteria.
We’re using a streamlined application process to allow for quicker submissions, so there’s still plenty of time to meet the Friday, October 27th deadline.
Prior award winners have used funding for technology needs, tuition costs, travel expenses, and more. Click the video below to hear how 2022 award recipient Nolan used his award funding and why he thinks other young adults should apply.
Click the “CC” button to activate closed captioning.
Long-Term Care & Life Insurance Resource
Some of the most common questions we receive from our community are concerns about whether insurance rates will change or a new policy application will be accepted after receiving a formal Alport syndrome diagnosis.
To answer these questions and more, we have put together a “Frequently Asked Questions: Life Insurance and Long-Term Care” document with the assistance of John Watson, an ASF Emerging Leadership Member who is also a professional in the insurance industry.
This new resource addresses the major concerns of Alport patients who are considering purchasing a life or long-term care insurance policy for themselves or a child. It also provides guidance on the best strategies for obtaining a policy, as well as alternative options to consider.
Natural History Study Update and Opportunity
Since its launch last year, 22 patients have enrolled to participate in the ground-breaking Alport Syndrome Natural History Study at sites across the U.S. This includes 15 adults and 7 children. Thank you for stepping forward to support critical research. The success of this valuable effort relies on patient participation. Our goal is to enroll up to 60 patients in this collaborative project with NEPTUNE, the academic research consortium overseeing this important observational study. This study represents our own patient community taking charge of its research roadmap.
More study locations have recently been added in California, Colorado, Missouri, and Washington. The study is funded by Alport Syndrome Foundation, to support the collection of human data for translational research. Researchers aiming to help better treat and/or cure our disease need scientifically collected data about how Alport syndrome affects humans. This study collects family history along with several visits over three years to collect data points such as blood pressure, urine and blood samples, and Alport genetic mutations. Click here to learn more about the study and how to participate. If the closest site requires some travel on the part of the patient, ASF offers stipends to help offset out-of-pocket expenses. Contact [email protected] for more information.
FDA to Hold Listening Session on Farxiga Cost
The Centers for Medicare & Medicaid Services (CMS) is facilitating patient-focused listening sessions this Fall related to a small number of drugs being considered for price negotiations. One of these drugs is Farxiga, which is becoming commonly prescribed to adult Alport patients as a supplement to standard of care.
Farxiga was FDA approved in April 2021 “…to reduce the risk of kidney function decline, kidney failure, cardiovascular death and hospitalization for heart failure in adults with chronic kidney disease who are at risk of disease progression.”
The virtual public listening sessions will provide an opportunity for patients, beneficiaries, caregivers, consumer and patient organizations, and other interested parties to share input relevant to drugs selected for this round of negotiations.
The 90-minute listening session for Farxiga will be held on Thursday, November 2, 2023 at 12pm Eastern Time.
These sessions are open to the public and will be live streamed here.
Registration is only required if you would like to make a public statement. Click here for further details.
Take Action to Sustain Our Efforts
Our 2023 Annual Campaign is October 16th – November 5th.
We need Annual Campaign volunteers. The more volunteers, the easier reaching our goal will be.
To meet the needs of our growing community, ASF has set an ambitious 2023 Annual Campaign goal of $250,000 in just three weeks. These are the funds that help ASF survive, grow, invest in research, and provide all of our educational resources, programs, and events free of charge.
What does a campaign volunteer do?
- ASF makes fundraising easy and rewarding. We can help volunteers of all ages create a personalized, online fundraising page in minutes.
- With a personalized link that can be shared by email, text, or social media, volunteers can reach out to their network of friends, family, and colleagues to spread Alport awareness and ask for their support at any level. Gifts of all sizes add up.
- Campaign volunteers do not need to contribute financially themselves if they are not in a position to do so.
The more people we can reach for awareness and support, the more successful our Campaign will be!
If you are interested in volunteering, please email ASF at [email protected].
Alport Connect 2023: See You Soon!
Our biggest event of the year is October 7 & 8. We look forward to seeing all those who can attend the meeting. We have so much planned that we can’t wait to share with you.
Registered attendees are encouraged to watch their email inbox, as we will release some final event details in the coming days.
All event attendees will be wearing masks during the indoor sessions of the meeting. We wish everyone safe travels. See you in San Diego!
Thank you to our 2023 Alport Connect sponsors:
View our Newsletters and Announcements page for an archive of prior communications.