Special summer camp coming to Indiana for families affected by ALS

INDIANAPOLIS (WISH) — A special summer camp is coming to Indiana this year for the first time, and it’s specifically for families with a parent or grandparent diagnosed with ALS.

Governor Mike Pence just declared May as ALS Awareness Month in Indiana.

ALS, or Lou Gehrig’s disease, is a nerve disease that can take away someone’s ability to walk and speak.

When that happens to a parent or a grandparent., it often affects the person’s entire family.

A special camp coming to Indiana this summer is designed specifically for those families.

It’s a camp called Hope Loves Company that has been operating across the east coast for about five years.

This year a family helped bring it to the Midwest and they’re asking other families to sign up.

ALS entered the Zoellner family three years ago when Richie was diagnosed.

His wife Stacey learned about the organization Hope Loves Company when looking up information on raising kids in a household with a parent who has ALS.

“I work for LIDS Sports Group and once I looked at the organization I thought that there was an opportunity with the LIDS Foundation,” Stacey Zoellner said.

The foundation granted thousands of dollars to Hope Loves Company.

“That was able to bring the camp here to Indiana,” Stacey Zoellner said.

The camp has never taken place in the Midwest, so Stacey is excited to be able to take their 4-year-old daughter.

“Kelsey is still a little young to really understand what it’s all about but I just know how important it is for kids to feel like they fit in,” she said.

Cindy Wise is the Executive Director of Indiana’s ALS Association.

“I think it’s an unmet need,” Wise said, “ALS impacts the entire family and it impacts everyone directly involved with the family and that includes the kids.”

She explained what the camp will be like.

“Canoeing, all the things you do at camp, but there will also be certain parts of the day that the activities will be geared more toward a therapeutic approach,” Wise said.

She said for kids like Kelsey a special camp like this can be critical.

“A lot of things about ALS aren’t fun and we’re actually addressing concerns and needs, but we’re having fun at the same time,” Wise said.

“Just to kind of feel like, you know what, you’re not alone, whether its a parent or grandparent who has ALS or had ALS,” Zoellner said.

Stacey hopes this camp is a success and can return every year.

“I just want to be able to try to help other kids in this situation and hope that we can just continue to help one another down the road,” she said.

The camp is taking place at the Flat Rock River YMCA Camp, just southeast of Shelbyville.

It’s completely free.

Families from states surrounding Indiana are also welcome to apply.

Camp is the week of June 20.

You can sign up through June 1 here.