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Andi Callaway founded the Nephrotic Syndrome Foundation a few years after her 6-year-old son was diagnosed

DANVILLE, CA — When Andi Callaway’s son was diagnosed with Nephrotic Syndrome, a category of rare kidney disorders, one of the hardest aspects was the uncertainty that came with it. Nephrotic Syndrome is an umbrella term for a number of symptoms that vary highly by patient, so it’s hard to map out a proper course of treatment.

“It’s so individual for each child, that it’s kind of a matter of guess and check, so there’s no way to really know other than trying the medication to know whether that medication will work, and then once they’re on it, there’s really no way to know if it’s working,” said Callaway, an Alamo resident whose 16-year-old son has been dealing with Nephrotic Syndrome for over a decade.

“This disease is so frustrating for the parents because it’s infuriating, there’s nothing you can do, your child is so sick, their whole life has changed, there’s no information or answer or way to fix them. There’s not even really a plan, where you can say, ‘OK, this is our plan for the next year.’ It’s just changing constantly, so the constant disappointment and stress of it was really overwhelming so to me getting involved in it and doing something filled that need for me as a mom to try and help.”

Callaway started helping where she could, but she grew to realize that there was no single organization to provide comprehensive support to victims of the disease. In 2017, she founded the Nephrotic Syndrome Foundation, a now global organization whose main goal is to provide support to the families suffering from this condition.

“Our mission is to support the children diagnosed with Nephrotic Syndrome and their families and the ongoing search for a cure, but really our first and foremost priority is to serve the child and the family,” she said.

It achieves that through eight different programs:

• The Backpacks of Hope Program enlists a team of volunteers to stuff backpacks full of valuable items specially curated for children with the syndrome. The backpacks include medical supplies (many of which are not covered by insurance), educational supplies, and comfort items. Each backpack is valued at around $350. The next backpack stuffing event will take place on April 21 at the Community Presbyterian Church in Danville. For more information, email dana@nephroticsyndromefoundation.org.
• The Thermometer Program provides a hospital grade thermometer, valued at over $300, to immunosuppressed children anywhere in the United States. These thermometers allow families to get a quick and accurate reading.
• The Finding Health series is a series of free webinars in which experts discuss a range of topics of importance to families with a diagnosis, including how to manage Nephrotic Syndrome in school, mental health, healthy eating, financial resources, and more.
• The NSF Podcast, hosted by Callaway and Peer Team Leader Jeremy Bedig, which focuses on similar topics.
• The NSF Peer Team matches older teens and young adults with NS with younger people for mentorship and friendship. Peer Team Leads host a number of events, meetups, fun activities, and more.
• The Patient Grant Program gives thousands of dollars in grants to families dealing with NS. Many treatments are not covered by insurance, and related costs in transportation, mental health, diet and more can add up very quickly. NSF offers grants to pay for medical bills, counseling, utilities, rent and more, depending on the nature of the application.
• The Little Angels Program provides a care package valued at $150-200 each for about 6-8 families each year undergoing an unusually tough time.

The foundation also supports research through active collaboration with several labs. They also help facilitate large clinical trials, sometimes through providing transportation to the location of the study. This year, the foundation also anticipates funding its first research grant of around $10,000.

These programs are expensive. The programming budget is about $500,000 a year, almost all of which comes from private donations. The foundation’s flagship fundraiser is its Day on the Green golf tournament at the Diablo Country Club, which features a live auction, raffle, awards ceremony, and 18 holes of golf. This year’s tournament will take place on May 22, and tickets go on sale April 1.

For more information on the foundation and how to get involved, visit nephroticsyndromefoundation.org.

Shared from: Michael Wittner,Patch Staff