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Alport Syndrome Foundation growing by leaps and bounds

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Posted: Friday, July 6, 2012 11:49 am

Ahwatukee Foothills resident Sharon Lagas and her fellow founders of the Alport Syndrome Foundation knew where they wanted to take their organization and knew they had the power to do it.

They just didn’t think it would come together as fast as it did.

The organization recently pledged $100,000 to a doctor at Washington University for a one-year research project regarding Alport Syndrome. Dr. Jeffrey Miner’s proposal, called “Defining Efficacy of Combination Drug Therapy in Alport Mice,” was selected from a total of six and was the only one from within the United States to apply for the funding.

Lagas was instrumental in pushing the organization to success and expansion as information about Alport Syndrome became more public. She has two sons who have the genetic disorder that affects kidney function.

Lagas hopes that the results of Miner’s research will lead way to a clinical trial. His research “will use a mouse model of Alport Syndrome to test the hypothesis that treatment with an ACE inhibitor already known to prolong the useful life of the kidney, together with a small molecule inhibitor of inflammatory cell mobilization, will lead to an even slower rate of progression to kidney failure than with either treatment alone,” according to a press release.

“We know that $100,000 only goes so far but we’re really proud of it,” said Lagas, who is president of the Alport Syndrome Foundation. “But we are looking at it as if it was a seed funding. We evaluated the potential for this project and liked the possibilities.”

A major fundraising event is the 5K for Health Kidneys, which is in its fifth year. They raised more than $30,000 with the event taking place in six different cities across the United States.

The Alport Syndrome Foundation will bring those affected by the disorder together this month at the University of Minnesota. It will be informative for everyone involved, Lagas said, which includes teenagers who have Alport Syndrome and who will soon be their own advocates.

“These young adults get to ask their questions and get to interact together,” Lagas said. “We educate them on how to advocate for themselves and how to talk to their doctor as they move from pediatrics to looking after themselves.”

The vision of Lagas and the other founders is becoming more clear each year. They have brought together thousands of people across the U.S. and world and created relationships that would never have existed.

“Sometime we all (from the organization) step back and go ‘wow,’ and it’s all thanks to the community of support we have received over the past five years,” she said. “I hoped it would get this big and thought maybe it would, but not in five years.”

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• Contact writer: (480) 898-4903 or

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