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FIONA Study Recruiting Pediatric Kidney Patients

The FIONA Study, sponsored by Bayer AG, is a clinical trial open to eligible pediatric Alport syndrome patients ages 6 months through 17 years old. The study is evaluating the effect of finerenone on persistent high protein levels in the urine of patients with chronic kidney disease (including Alport syndrome) despite already taking an ACE or ARB medication. Trial participants will remain on an ACE or ARB and will receive finerenone or a placebo once daily by mouth for 6 months.

Full eligibility requirements and a list of U.S. and international study site locations can be found here.

To facilitate study participation, options for remote study visits using telemedicine and home health services may be offered where possible and allowed by local regulations. Additionally, patients will be reimbursed for study-related expenses, such as travel or lodging costs, if allowed by local regulations.

As Alport Syndrome Foundation continues to drive more pharmaceutical interest in our rare disease, we believe it is important all community members understand our organization’s guidelines for interacting with industry partners. Read our updated Policy for Engaging with Industry, which outlines financial contributions, communications concerning clinical trials, and more.

Scientific Journal Spotlights Alport Patient Perspective

ASF Executive Director, Lisa Bonebrake, was recently invited to write an article from the patient perspective for the scientific journal Glomerular Diseases.

Lisa shares her journey as an Alport syndrome patient and caregiver – from misinformed and misdiagnosed to motivated and on a mission. As misperceptions about our rare disease persist, it is crucial for patient advocates to stayed informed and to insist on accurate diagnosis and proper treatment.

Click here to read Lisa’s patient perspective.

Join Us: Upcoming Virtual Discussions

In March, we will be hosting two 60-minute virtual discussions. Both events are free but require pre-registration via the links below:

Tuesday, March 14, 2023
Ways to Get Involved with the Alport Community
5:00pm Pacific / 6:00pm Mountain / 7:00pm Central / 8:00pm Eastern

Click here to read the event description and register.

Tuesday, March 28, 2023
Food Choices for Optimal Kidney Health
5:00pm Pacific / 6:00pm Mountain / 7:00pm Central / 8:00pm Eastern

Click here to read the event description and register.

To encourage open conversation, Direct Connect events are live and not recorded. Direct Connect meetings are specifically for patients and family members ages 18+.

Over-the-Counter Hearing Aids: Audiologists Weigh In

With FDA-approved over-the-counter (OTC) hearing aids now available for those ages 18+, ASF asked two audiologists familiar with Alport syndrome for their input about these devices.

Click here for an explanatory article by Dr. Sara Mattson, who has over 15 years of experience treating patients with all levels of hearing loss.

Dr. Todd Landsberg, whose Alport syndrome diagnosis led to his career in audiology, provides his input on OTC devices here.

Youth Soccer Fundraiser in Puerto Rico Supports ASF

Following in his family’s footsteps, 16-year-old Mauricio Barbosa Martinez-Alvarez of San Juan, Puerto Rico recently organized a successful fundraising event to support the efforts of ASF.

Mauricio’s family is affected by Alport syndrome and both of his older brothers, Gabriel and Emilio, have previously organized events to support Alport research and education. With 4 teams, 54 players, and generosity by all, Mauricio’s recent event raised $10,610 for Alport Syndrome Foundation.

Mauricio notes that for him, organizing the event was “challenging but emotionally fulfilling.” Thank you to Mauricio and his entire family, and to all the athletes and families who participated in this wonderful event!

Gratitude on Rare Disease Day – Feb. 28th

As February draws to a close, we look forward to celebrating Rare Disease Day on the “rarest” day of the year, February 28th.

Alport syndrome is just one of the 7,000+ rare diseases that affect a combined 300 million individuals worldwide.

While Rare Disease Day is just one day a year, our work to spread Alport awareness and education continues daily. This year, we would like to extend extra gratitude to the members of our Medical Advisory Committee and Scientific Advisory Research Network, whose dedication and insights help guide our work, as well as to all the patients and families that engage with and support our efforts.

We remain deeply appreciative for all the patient volunteers, advocates, and partner organizations that help raise our collective voice. Next month is Alport Awareness Month and National Kidney Health Month, and we look forward to sharing how YOUR patient journey can shape the future of Alport care.

View our Newsletters and Announcements page for an archive of prior communications.