About five years ago, Sharon Lagas probably wouldn’t have believed it if you told her an organization she started was about to award its second $100,000 research grant in the coming years.
But that is precisely what is happening for the Ahwatukee Foothills resident and the nonprofit organization she founded, the Alport Syndrome Foundation. The organization has been growing and spreading awareness about Alport Syndrome, a genetic disorder that affects kidney function, since its inception in 2007.
They recently contributed $100,000 to a research project performed by The Saban Research Institute of Children’s Hospital Los Angeles. The topic was to see whether amniotic fluid stem cells (AFSC) can slow the progression of chronic kidney disease. It was performed on mice and results came back positive.
“It shows that the kidney improves function,” Lagas said. “Once kidneys get fibrosis, they become scarred and eventually they are beyond repair. This work shows a lot of promise in helping this fibrosis. Now they are trying to figure out what those mechanism are, and hopefully translate those into treatment for human patients.”
With money raised from fundraising events throughout the year, such as the upcoming 5K for Healthy Kidneys, they hope to choose another research project in the near future in which to donate their proceeds. Last year alone, the grassroots nonprofit raised about $50,000 through all four of the 5K events that take place across the country. This year that number has grown to six.
The growth has amazed Lagas, who started the organization because her immediate family has been affected by the disorder.
“It’s been a personal goal of mine since I started this organization, besides funding research, is bringing people together,” she said. “People with this disorder are really hungry for information and connection, and there hasn’t been really anything up until now.”
Also on the horizon is another first for those affected by Alport Syndrome. They will be hosting a family conference at the University of Minnesota in July as a way to bring families together.
“It’s a weekend of education and social activities for the entire family,” Lagas said.
The fifth annual 5K for Healthy Kidneys will take place on Sunday, March 25 at Kiwanis Community Park, 6111 S. All American Way in Tempe. Registration can be made online at www.alportsyndrome.org, or on the day of the event, beginning at 7 a.m. Cost is $30 in advance for adults and $35 the day of the event, which begins at 10 a.m.
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