Sharon Lagas still remembers the “tragedy” that shook her family more than a decade ago.
At ages 5 and 6, her two sons were diagnosed with kidney disease in the same month her brother passed away from the same affliction.
“It’s affected three generations of our family, that’s what happens with Alport’s,” said Lagas, who started the Alport Syndrome Foundation. “You relive this generation after generation.”
Alport Syndrome is a genetic kidney disease that is believed to affect 1 in 5,000 people.
Lagas’ sons are now 16 and 17, attending Desert Vista High School, and have full kidney function with medication.
“We’ve come a long way,” Lagas said.
Since then, Lagas started the foundation about five years ago, aiming to help families affected by the disease, and create a much-needed community around the cause to fund research and find a cure.
Continuing in its sixth year, the foundation is hosting a 5K walk for kidney disease this weekend in Tempe. Everyone from walkers, strollers, and runners are encouraged to attend.
Hosted in March in honor of National Kidney Month, all proceeds of the event will go to education and community outreach for families affected by the disease. The foundation also works with medical professionals in nephrology, co-hosting symposiums and other events for residents.
Lagas said when her sons were diagnosed, resources for support or information was scarce.
“By forming this, we’ve formed a community where you go from feeling like a victim to being an advocate,” she said. “It’s here so that no one is ever alone again.”
The walk will be hosted at Tempe Kiwanis Park on Sunday, March 24 from 8 to 11 a.m. Registration tables and the starting point will be near the Baseline Road entrance. Cost is $35 to register the day of the walk.
For more information, visit alportsyndrome.org.
• Contact writer: (480) 898-4903 or firstname.lastname@example.org. Follow her on Twitter @dmartinezAFN.