ASF Launches New Blog!
ASF's new blog for patients was launched in May with several articles about women and Alport Syndrome.

5K for Healthy Kidneys a Great Success!
The 5K for Healthy Kidneys events in Arizona and South Dakota raised more than $47,000 for education and outreach.

Alport Syndrome Observational Study
A observational study for Alport Syndrome patients is being conducted by Regulus Therapeutics. For more details, including international participating study sites, go to the study website.

New ASF Store
Help raise awareness and show your support for Alport Syndrome patients and families with a variety of ASF merchandise at the new ASF Store.

Support patient fundraising, too!

Annual Campaign
Thank you to all the ASF campaigners and donors who raised more than $100,000 for Alport Syndrome research during the 2014 Annual Campaign.

Stay Updated!
Have you seen the latest ASF newsletter?
Be sure to register to receive the newsletter each month.


Music for McKenna
Bethesda, MD
On June 6, local band Ten Feet Tall will play at a fundraiser in honor of young McKenna. The event will be held at Villain and Saint.

Remember Moms, Dads and Grads
Make a tribute gift in honor of a loved one. Honorarium or memorial gifts can be made in any amount and are tax-deductible.

Tom Denham's Charity Climb
Support Tom when he climbs Mt. Shuksan June 13-15 in honor of his daughter Rachel. He has committed to raise $5,000 a year for 10 years to benefit ASF!

For more details about all upcoming events, go to Upcoming Events.

To see completed events, go to Past Events.

Stories and Videos

Family Stories
  • Robbie’s Story

    I was born with Alport Syndrome. It runs on my mother’s side of the family. They knew when I was born that I most likely had the disease. I have two older brothers and they also have Alport Syndrome and my mother is a carrier. As far as cousins and other family members, none have it that we are aware...

  • Missy’s Story

    My story starts when I was young, too young to really remember.  My mom says I was still wearing diapers, so I was only a year or two. She noticed the color of my urine was dark.  I went through all kinds of tests.

  • Lisa‘s Story

    When I was a senior in high school I started to become sick. I had just lost my father a few years prior and our family had barely started the process of trying to recover from that. I was just a rebellious kid who was terrified knowing that something wasn’t right with my body.

  • Todd‘s Story

    The first time I heard about Alport Syndrome was in the second grade when our family doctor told my parents I had the disease. Maybe being diagnosed with it early before I even understood anything about it was a blessing, since I really did not worry much about it.

  • John‘s Story

    John was diagnosed with Alport Syndrome when he was a baby. As is typical with many families affected by Alport Syndrome, John is not the only family member with the disease. Four other family members had received kidney transplants as a result of an Alport diagnosis.

Alport Syndrome Videos
Alport Syndrome Foundation
Alport Syndrome
Story of Alport Syndrome
Messages of Hope - Meet Kevin
Messages of Hope - Meet Jessi
Patient to Patient - John