Sharon Lagas started the Alport Syndrome Foundation to spread awareness about the disorder and to connect families affected by it.
The Ahwatukee Foothills mom has seen her share of it in her own family. Both of her sons have it, as did her brother.
Alport Syndrome is a genetic disorder that causes the kidneys to deteriorate and eventually fail. There is no cure but Lagas hopes that increased research funding may one day change that.
"There's research going on all over the world," she said.
Lagas and members of the foundation are doing their part to bring in funding. They hold several fundraisers throughout the year as well as the Healthy Kids Annual Campaign which brought in $66,000 in 2010.
With the money raised from previous events, the foundation has pledged $100,000 for research. It is deciding between seven research facilities that applied for the funding.
"It's tremendous to see how much the organization has grown," she said.
The next event the foundation is hosting is its third annual Alport Syndrome 5k for Healthy Kidneys at Kiwanis Community Park in Tempe on April 3. The race brought in more than $50,000 last year and $40,000 the year before.
Lagas said within a month in 2004, her sons were diagnosed with AS and her brother passed away due to the aftereffects of kidney failure. He was battling lymphoma. She started the foundation in June 2008.
"I just wanted to connect with other people who were affected by Alport Syndrome," she said.
This will be the first year that a 5k is also being held outside of Arizona. There will be 5k races in Louisville, Ky. and Wauconda, Ill.
Alport Syndrome was named after Dr. Cecil Alport who first identified it in 1927. To find out more or to register for the race, visit www.AlportSyndrome.org.