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New Video & Tip Sheet for Managing Pediatric Alport Syndrome

ASF has created two new educational resources to help parents and families better understand important elements of managing care for children with Alport syndrome. We turned to the expertise of renowned pediatric nephrologist and ASF Medical Advisory Committee member, Dr. Bradley Warady, to help create these practical tools:

 

  • “Pediatric Alport Patient Care: What You Need to Know Right Now” Click the preview image below to watch this new 25-minute video on our YouTube Channel. Dr. Warady discusses diagnosis, ongoing care, lab values to pay attention to, explaining Alport syndrome to a child, and more.
  • “First Pediatric Nephrology Appointment: A Guide for Parents” As a complement to the video, ASF compiled questions to ask your pediatric nephrologist, Alport vocabulary to learn, lab values to understand/track, and more. Click here to view this patient-friendly resource.

Closed captioning is available by clicking the “CC” button

Join Us: Upcoming Direct Connect Zoom Meetings

Direct Connect meetings run for 60-minutes, are moderated by ASF Staff and volunteers, and allow YOU to interact with other members of the larger community. Both upcoming events are free, require pre-registration, and are open to those ages 18+.

Monday, February 28th
5pm PT / 6pm MT / 7pm CT / 8pm ET
Effectively Communicating Alport Needs with Doctors, Employers, Schools

Click here to register.

Thursday, March 10th
5pm PT / 6pm MT / 7pm CT / 8pm ET
Let’s Talk Food: Recipes, Substitutes, and Successful Meals

Click here to register.

ASF Staff Member Awarded New Role

The Board of Directors is pleased to announce Kevin Schnurr has been promoted to the role of Associate Director of Alport Syndrome Foundation. He began working for ASF in 2014, most recently serving as the Director of Communications and Patient Engagement since October 2019.

Kevin brings extraordinary organizational, interpersonal, and communication skills to ASF. He notes that his dedication to the patient community stems from the educational and emotional support he received from ASF following his unexpected diagnosis in 2012.

“When a nephrologist informed me of my Alport diagnosis, I was at 7% renal function and in a hospital facing emergency dialysis. My whole world had turned upside down. An internet search led me to ASF. I’ll never forget co-founder Sharon Lagas picking up the phone and guiding me during my darkest and most vulnerable moments. Serving the Alport community remains an honor and privilege,” says Kevin.

Save the Date for Alport Connect ’22: August 6th & 7th

Join us again, or for the first time, for this popular annual patient event! This year’s all-virtual event weekend will feature smaller video rooms for patients and family members to connect about topics of interest, as well as guidance from medical experts.

The event will be free of charge, hosted within the ASF Community app, and open to all those ages 18+ interested in learning more about our rare disease. Registration details will be made available closer to the event dates.

Thank you to all the individuals who participated in our survey about planning this event. A majority of respondents indicated they remain uncomfortable traveling by plane or other forms of public transportation, and/or meeting inside in large groups due to COVID. The safety and health of attendees remains our highest priority.

Report: ASF’s 2021 Growth, Accomplishments & More

ASF is proud to share its first-ever Annual Report. The report focuses on our organization’s exponential growth, accomplishments over the course of 2021, as well as funds received and how they have been directed toward our mission of improving the lives of people living with Alport syndrome.

Click Here to View the 2021 Annual Report

Recently Published Alport Research

In a study published in the February issue of the Journal of the American Society of Nephrology, authors Anissa Widjaja et al. examined the role of protein interleukin 11 (IL-11) in fibrotic kidney disease and, more specifically, its potential role in Alport syndrome.

Findings suggest a possible therapeutic concept in targeting and neutralizing IL-11 to improve kidney function in Alport patients.

ASF’s Patient Engagement Coordinator, Afton DeLucca, provides a layman’s summary of the research at this link.

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