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Junior Woman’s Club to host Batten disease fundraiser

Published: Thursday, April 17, 2014 2:42 p.m. CST • Updated: Tuesday, July 29, 2014 9:54 p.m. CST
Caption
(Sarah Minor — sminor@shawmedia.com)
Tracy VanHoutan, of Downers Grove, holds his 10-year-old son Noah, who has Batten disease, on May 3, 2013. Tracy and Jennifer VanHoutan started the Noah's Hope charity after two of their children, Noah and Laine, 8, were diagnosed with the rare disease.

DOWNERS GROVE – The Downers Grove Junior Woman’s Club will host its first annual Spring Spree Shop for Charity event April 24 at Emmett’s Ale House to benefit Noah’s Hope, a Downers Grove-based charity that funds research on Batten disease.

Tracy and Jennifer VanHoutan started the charity after two of their children, Noah, 10, and Laine, 8, were diagnosed with the rare disease.

Children with Batten disease develop normally at first, and then slowly lose motor functions and suffer gradual mental deterioration and vision loss, potentially dying from the disease. Tracy said Noah and Laine have been stable over the last year.

“Which is good, we know a lot of other kids that are having kind of a rough winter, whether it’s flu or things like that,” he said.

Since starting the charity, the family has raised more than $250,000, which is provided directly to researchers at hospitals or universities.

Because the disease is so rare – only about 450 children have it in the country – very little research had been done to develop treatments before the family became active.

Noah’s Hope funded a Rutgers University project involving enzyme therapy and it is currently in clinical trials in Europe, Tracy said.

“It would be a great treatment, but it would be therapy and not a cure,” he said. “We continue to work in parallel on different treatments and on things that could potentially be a cure one day.”

Residents looking to help the charity can attend the Junior Woman’s Club’s Shopping Spree at Emmett’s Ale House this month.

Shoppers will be able to find unique gifts for upcoming holidays and special occasions such as Mother’s Day, teacher appreciation, birthdays, graduations, and baby and wedding showers. There will be more than 10 local artisans and vendors showcasing a variety of items including handcrafted jewelry, handbags, home decor, and children’s clothing and accessories.

A door prize raffle will also take place with gifts from the artisans as well as a gift card from Emmett’s Ale House.

“It’s so powerful what they’ve been trying to do in the community,” Junior Woman’s Club membership chair Anne Healy said of the VanHoutans. “Anything we can do as an organization to help their cause and mission, and since they’re local in the community, it just makes it even more special for us.”

The event is also the same night as Downtown Downers Grove Management Corporations Spring Girls Night Out, and Healy said she hopes the two events can play off of each other.

“Hopefully we will drive more traffic to that and vice versa,” she said.

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