YOUR DIAGNOSIS IS IMPORTANT FOR RESEARCH
Alport syndrome is commonly misdiagnosed. In an effort to more clearly understand why, under the guidance of our Medical Advisory Committee, we have developed multiple choice and free response questions encouraging patients to share their diagnosis stories. Collectively, this information can help medical professionals understand the patterns and tipping points for an accurate Alport syndrome diagnosis.
The brief survey, open to the global Alport patient community, is anonymous, or you may choose to provide email contact information in case clarification is needed. Collective results will be shared with the patient and medical community in March 2021, which is both Alport Awareness and National Kidney Month.
Please help research by sharing your diagnosis story by Monday, February 8, 2021.
The following are links to two brief surveys – one for patients and one for parents. Both might apply to you. YOUR STORY IS IMPORTANT.
- A patient survey for those age 18 or older with a confirmed Alport syndrome diagnosis:
- A survey for parents on behalf of your first-diagnosed child. We kindly ask that only one parent complete the survey. It’s important the child’s information is only provided once.
Please note: Patients with children under age 18 are encouraged to take BOTH the Patient and the Parent Diagnosis Story Survey. Thank you for your participation.
CONGRATULATIONS TO 4 YOUNG ALPORT PATIENTS
Meet the winners of the 2020 Paul Silver Enrichment Award!
Niklas, Layla, Lindsay, and Gabrielle (Top left, clockwise) are recipients of this annual financial award provided by the Silver Family and Alport Syndrome Foundation in memory of patient Paul Silver.
Paul was the recipient of a similar award while studying filmmaking in college. This Enrichment Award was created in his memory to “pay it forward” and help other young people achieve their personal goals.
Learn how the 2020 Awardees plan on using their funding by visiting our website.
YOU’RE INVITED – LIVE Q & A SESSION
2/24/21 Update: This event has passed. Thank you to all those who joined and to Dr. Warady for his time. Click here to watch the recording.
After his valuable presentation at the 2020 Family Meeting, ASF is pleased to welcome back pediatric nephrologist Dr. Bradley Warady for a Q&A session:
Navigating Alport Syndrome from the Cradle to College
Wednesday, February 24th
4pm Pacific / 6pm Central / 7pm Eastern
In this 1-hour virtual session, Dr. Warady will be answering your questions about the management of care for pediatric Alport patients and the eventual transfer to adult care. All ages welcome.
FREE and OPEN to all members of the Alport community. Pre-registration required.
Dr. Bradley Warady is Professor of Pediatrics at the University of Missouri-Kansas City School of Medicine and Senior Associate Chairman, Department of Pediatrics, Chief of Nephrology and Director, Dialysis and Transplantation at The Children‘s Mercy Hospitals and Clinics, and member of ASF’s Medical Advisory Committee.
NEW: ALPORT RESEARCH NETWORK LAUNCHED
ASF has established a new Scientific Advisory Research Network (SARN) comprised of eight U.S. and international Alport syndrome researchers. The role of this group is to provide expert guidance to ASF on how to best achieve targeted research objectives. The group has begun to address topics such as:
1. Does CRISPR/Cas9 offer a viable curative pathway for most Alport patients?
2. Improving the understanding of the molecular biochemistry of the collagen IV molecule in the glomeruli of the kidney.
3.Better understanding of the molecular biochemistry of the collagen IV molecule in less studied co-morbidities (hearing, eyes, pregnancy) across all genotypes and phenotypes.
In short, the SARN is focused on fundamental research of Alport syndrome with the understanding that curative therapies will not become available unless such research is supported – we can’t cure what we don’t know!
“IMMUNO BILL” SIGNED INTO LAW
The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2020, commonly known as the “Immuno Bill,” was signed into law by the President of the United States on December 28, 2020, as part of a larger pandemic-centric legislative package.
Currently, Medicare coverage for renal transplant patients has a 36-month expiration. The new law, which goes into effect in 24 months (January 2023), will help eligible post-kidney transplant individuals gain access to limited Medicare Part B drug coverage for their costly, life-sustaining immunosuppressant medications if they lack other insurance past the 3-year-mark. Exact details of the law will be revealed in an upcoming Centers for Medicare and Medicaid Services (CMS) integration fact sheet.
ASF appreciates all the persistent advocates in the larger renal community who helped make this shared victory possible. It is of great importance to kidney patients and families.
AFFINITY CLINICAL TRIAL TO BEGIN RECRUITMENT
The AFFINITY study will begin enrolling patients with Alport syndrome in the United States and Australia in the coming months. AFFINITY is a phase 2 clinical trial studying an investigational medication called atrasentan. Atrasentan may benefit patients with Alport syndrome and other glomerular diseases by reducing the amount of protein in the urine and preserving kidney function. Patients in the study will receive atrasentan as an oral tablet once a day for approximately 1 year and there are options for remote study visits using telemedicine and home health at some clinical trial centers.
Sites open for enrollment in the United States and Australia will be announced in future newsletters. Other countries participating include South Korea, United Kingdom, Italy, and Spain.
For more information about the study visit clinicaltrials.gov.
NEED A 2020 GIFT RECEIPT?
Thank you for your generous support in 2020. Digital receipts are available immediately upon request. If you sent a check or made a gift online and can’t put your hands on the acknowledgement we sent by email or hard copy, please contact us. We have had a few reports of U.S. mail not being received. We appreciate and value your support and confidence in our efforts.
