Fewer than 200 participants showed up seven years ago for the inaugural Alport Syndrome Foundation (ASF) 5K. More than 300 are expected at this year’s event later this month.
“It’s been great to see how we’ve grown over the years,” said Sharron Lagas, who co-founded the foundation after her brother died from the disease and both her sons were diagnosed with it.
Alport Syndrome is an inherited disease of the kidney that can also affect hearing and vision. It is estimated to affect at least 1 in 5,000 people. Patients of all ages can exhibit symptoms of the disease; however, the majority of those affected by Alport Syndrome are boys who require dialysis or a kidney transplant by their early 20s.
The disease is devastating to families because it often affects multiple family members, generation after generation.
In addition to her two sons, Joseph, 18, and Max, 17, Lagas and her mother are carriers, as are her two nieces.
“You relive this generation after generation,” Lagas said. “But the research is further along than when we started (the foundation). We still have a lot of work to do. I think one particular therapy will go to clinical trial in a couple years.”
The ASF’s annual 5K for Healthy Kidneys to help fund education and community outreach for families affected by the Alport Syndrome, is Sunday, March 30, at Tempe’s Kiwanis Park.
The fundraiser is each March in connection with National Kidney Month to raise awareness of the risks of chronic kidney disease and the benefits of organ donation, as well as Alport Syndrome. This year, March is also the first Alport Awareness Month, when members of the Alport Syndrome community from all over the U.S. will host awareness activities and events.
Alport Awareness Month is designed to increase the visibility of Alport Syndrome through a variety of grassroots efforts by patients and families across the country. The national recognition seeks to educate Americans, legislators, and the medical community on the importance of routine testing to detect kidney disease in the early stages.
“Our goal is to expand available resources to make Alport Syndrome a treatable disease. Increasing awareness of the disease is a significant step toward that goal,” Lagas said. “Although the foundation has raised over $1 million to increase patient resources and support research for this disease, Alport Syndrome still gets relatively little attention and funding.”
The 5K is the ASF’s biggest fundraiser, bringing in between $30,000 and $50,000 each year, Lagas said.
Registration is $25 for adults and $15 for children 13 and younger. Registration fees increase to $30 for adults and $20 for children on March 29.
For more information or to register, got to alportsyndrome.kintera.org/arizona5k2014.
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