March Is Alport Awareness Month!
March is both Alport Awareness Month and National Kidney Month. To help bring awareness and a much-needed educational resource to our community, ASF is proud to announce the release of a new tool for pediatric Alport patients.
Our Milestones Tool was created with input from several members of ASF’s Medical Advisory Committee, along with patients and caregivers.
The tool is designed to help pediatric Alport patients to become educated about their disease and become proactive in their care. The tool works in stages, based on the participant’s age (from ages 10 to 19) and the renal symptoms they are experiencing. The questions are meant to be discussed over time with the pediatric nephrologist who will ask the questions and facilitate an educational discussion during regular checkup appointments.
The following video features young adult Alport patients who share their perspective on the value of the tool.
Click the “CC” button for closed captioning.
We encourage you to use this tool with your family’s pediatric nephrologist, and let us know how the process goes. We expect to make updates and improvements over time, so please feel free to share your real-life experiences and feedback!
Renal Runners Join TEAM ASF
Olivia and Claire (pictured right) will be joining a local annual half marathon in May as the Renal Runners for TEAM ASF.
“I am running this race in honor of my brother, Elijah, and others who live with Alport syndrome,” says Olivia about why she chose to be part of this event. “When the miles get long and tough, I am humbled and reminded how thankful I am for my health, the ability to run, and that I can use my love for running to raise awareness and funds for an organization that is so near to my heart.”
You can read more about the Renal Runners and donate to their team here.
TEAM ASF is designed to encourage individuals participating in events to raise awareness and funding for Alport Syndrome Foundation while earning customized branded apparel.
Interested in organizing your own event to raise funds and awareness to help conquer Alport syndrome? Events can vary from a walk/run, casino or entertainment night, a golf, bingo, or corn hole tournament, or anything creative in between. Email ASF staff and we can help get you started!
Reminder: Join Us This Month!
In order for young Alport patients to take over their own care when they become adults, age-appropriate education about their disease and how to manage it should occur early and often. Join us for a 60-minute discussion about empowering ways to talk with your child to help them understand how Alport syndrome can affect them, how to be proactive in their own care, and more.
Educating Pediatric Alport Patients
March 25, 2025
7:30 PM ET / 4:30 PM PT
This conversation is open to patients and caregivers ages 18+. To encourage open conversation, Direct Connect events are live and not recorded.
Supporting a New Generation of Pediatric Nephrologists
We are proud to announce that the Alport Syndrome Travel Award has been created to recruit and train medical students and residents interested in pediatric nephrology.
There is a critical shortage of pediatric nephrologists, with only 37% of positions filled last year, making it difficult for families to get the care they need.
ASF Board Member and Co-Founder Sharon Lagas is on the American Society of Pediatric Nephrologists (ASPN) Foundation Board of Directors. Together, Sharon and Alport Syndrome Foundation have donated funds to establish this award to encourage and support the education and recruitment of new residents into pediatric nephrology.
If you would like to support the Alport Syndrome Travel Award or honor a pediatric nephrologist who has had an impact on your family’s lives, please click here.
Alport Connect Chicagoland Updates
With about four months to go until our largest patient event of the year, we have some important updates and reminders to share:
- There are still a limited number of spots in the Adult (ages 20+) and Teen (13-16 and 17-19) programs open. If you haven’t reserved your free ticket(s) for the event, you can do so and learn more here.
- At this time, our reserved room block at Hilton Chicago/Oak Brook Hills Resort is now sold out. If you would like to be placed on a waiting list should a room open up, please email us at [email protected].
- It’s best to book flights and hotel accommodations as soon as possible to ensure you are well-prepared for your stay in Chicagoland. Please see our Lodging Overview document for more information.
- If you are planning to fly to the event and do not yet have a Real ID, please make sure to have this updated or that you have another form of acceptable ID (eg, a valid passport), as this will be required for air travel beginning in May 2025. Click here for more information about Real ID and air travel identification requirements.
We look forward to seeing you this summer for a weekend of learning and connection!
Additional FIONA Study Sites Now Open
FIONA is a phase 3 placebo-controlled clinical trial studying an investigational medication called finerenone in pediatric Alport patients.
The following sites are now open and recruiting Alport patients ages 2 to <18 years old:
Pediatric Nephrology, Stanford Medicine
Stanford, California
Contact: [email protected]
Joe DiMaggio Childrens Hospital Research Center
Hollywood, Florida
Contact: [email protected]
Cleveland Clinic
Cleveland, Ohio
Contact: [email protected]
OHSU Doernbecher Children’s Hospital
Portland, Oregon
Contact: [email protected]
Other sites that are enrolling can be found in Baltimore, MD; Cincinnati, OH; Iowa City, Iowa; Kansas City, MO; San Antonio, TX; and Seattle, WA, with additional sites to come. To learn more about the study, including information about all site locations, visit our Clinical Trials – Active Studies page.
View our Newsletters and Announcements page for an archive of prior communications.
