What It’s Like to Donate a Kidney
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Each April, ASF joins the larger kidney community in celebrating “Donate Life Month,” bringing awareness to the importance of living organ donation and honoring those who make the amazing choice to give the Gift of Life.
As part of a new series of of educational videos we’re working on, ASF interviewed a recent living kidney donor about his experience. We invited him to speak about the evaluation process, surgery, recovery, and what he would tell other potential donors. We hope to help our community learn about the living donor process from individuals that have experienced it first-hand.
If you’ve received a kidney transplant, ASF is seeking feedback on upcoming patient-friendly resources about this topic. Your experiences are vital to representing a variety of transplant journeys. Email ASF Staff to connect.
Join Us: Alport Treatment Discussion
Wednesday, May 17, 2023
Anxiety Surrounding Alport Treatment Medications
5:00pm Pacific / 6:00pm Mountain / 7:00pm Central / 8:00pm Eastern
Click here to register.
Share your experiences and hear from others during this 60-minute conversation about anxiety associated with Alport treatment medications: side effects, costs, starting new treatment, and more
As part of Mental Health Awareness Month, join ASF’s Emerging Leadership Council for this facilitated treatment discussion featuring a mental health professional who is personally affected by Alport syndrome
To encourage open conversation, Direct Connect events are live and not recorded. Direct Connect meetings are specifically for patients and family members ages 18+.
The Powerful Role of Genetic Testing
The April 2023 edition of the Journal of the American Society of Nephrology (JASN) features a high-profile article detailing genetic screening research conducted at the University of Florence in Italy.
This is the latest scientific article in a growing body of published research estimating that, overall, approximately two-thirds of Alport syndrome patients and patient families remain misdiagnosed without the use of genetic screening to test for variants in the COL4A3, COL4A4, and COL4A5 genes.
According to the new JASN article, genetic screening saved 20% in long-term medical care costs within the Italian health care system by correcting treatment regiments and preventing dialysis with proactive transplantation.
ASF’s Volunteer Research Program Chair and Board of Directors member, B. André Weinstock, PhD, MSAS, prepared a summary of the JASN article at this link.
Learn more about Alport syndrome genetics and genetic testing opportunities on our website.
New Podcast Recordings Featuring Our Community
Visit our podcast page to check out recent recordings with knowledgeable speakers from our community.
Season 2 of the Rarely Heard podcast features new interviews with ASF Associate Director, Kevin Schnurr (Episode 5) and Dr. Matthew Hall (Episode 6), a consultant kidney physician in Nottingham, England with an interest in rare and inherited kidney diseases and pregnancy.
The pediatric-focused The Cribsitters podcast spoke with Dr. AC Gomez of Brigham Young Women’s Hospital. In this interview, Dr. Gomez expertly discusses recommendations for genetic testing in pediatric Alport syndrome, diagnosis, recommended treatment, and more. ASF is pleased to share Dr. Gomez will be working closely with ASF patient volunteers on a new resource for the transition from pediatric to adult care in Alport syndrome.
Lastly, TJ Mayfield (ASF Emerging Leadership Council and Executive Director of the Mississippi Kidney Foundation) conducted an interview with ASF Executive Director Lisa Bonebrake about Alport syndrome awareness and education.
Deadline Extended for Alport Odyssey Zine Submissions
In the interest of allowing more time for a variety of submissions for our first ever zine, Alport Odyssey, the deadline for contributions has been extended until Wednesday, May 31st at 11:59pm Eastern Time.
ASF is grateful to all those who have already participated.
More information about our project, including eligibility and submission guidelines can be found on our website.
View our Newsletters and Announcements page for an archive of prior communications.