Action Star: New City boy organizes Mito event

Jacob Shinder is a young man of few words. 

The 12-year-old from New City, NY, organized a mitochondrial disease event that raised awareness and more than $8,000, a majority of which he donated to MitoAction. When asked what he thought about the amazing success of the event, which raised about $7,000 more than Jacob expected, he replied:  “I think it’s good.”

Yes, he speaks sparsely, but he has a big impact.  

Movies for Mito

This remarkable boy created the event, Movies for Mito, in which attendees had a choice of viewing “Epic” or “Fast & Furious 6.” But it was so much more than a day at the movies. It was a community coming together to support a boy with Mito; it was a family affair; it was a true labor of love; it was a way Jacob could help others.

Movies for Mito was Jacob’s Bar Mitzvah project. “I really love movies and I have this [Mito] and I wanted to do a fundraiser,” said the boy who will be an eighth-grader next fall at Felix Festa Middle School. 

While Jacob did the majority of the work, the project was a family effort, including mom Rachel, dad Neil, sister Marlee, brother Adam, countless extended family members, and some friends. “It was a lot of planning,” said Jacob, who started organizing in February for the June 2 event. Jacob et al secured raffle items, made movie tickets, put flyers up all over town, solicited donations, sent emails, wrote thank you notes, set up the theater in about 30 minutes flat, and did whatever else needed to be done. 

Finding his voice

This soft-spoken young man went right up to people, introduced himself, and asked for donations. At the event, which drew 150 people, he introduced himself to everyone who attended. “Before the movie I ran around to make sure everything was in place,” Jacob said. “I was a little nervous before.”

But that didn’t stop him from addressing the whole crowd. “My most proud moment was when he stood on top of the basketball game to be above the crowd,” said mom Rachel. With megaphone in hand, he thanked everyone for coming and for helping raise money. “He had such confidence,” Rachel beamed. 

This event has helped shape the man Jacob is becoming. “Jacob would walk into a store and say, ‘I have a mitochondrial disorder and am doing a fundraiser to raise awareness.’ I never saw him so confident,” Rachel said. “This is defining who he is; it’s giving him purpose.

“He has the strength to do what other kids with Mito can’t do. He needs to own it.”

Jacob certainly owned this event; he just won’t say so. “It was a really good success,” he said. “I hope people learned about mitochondrial disorders and what it affects so that they understand.”

Jacob's Mito

Mitochondrial disease is an inherited chronic illness that causes debilitating physical, developmental, and mental disabilities. About 1 in 2,000 people has Mito. Jacob has atypical Chronic Progressive External Ophthalmoplegia, which causes double vision. Because of his youth, Jacob is able to suppress the second vision fairly well. “He’s constantly adapting to the double vision,” Rachel said. “While Jacob’s vision is not perfect, his insight into people’s emotions is much more acute than many his age.” 

Jacob also has a somewhat weak stomach, he can tire easier than his friends, he may get weak when he’s stressed, and he has heat, cold, and some exercise intolerance. 

Many of Jacob’s issues were dismissed early on, until finally in 2012 he was diagnosed with Mito. Reflux and vomiting were written off as “infant issues” that he would outgrow. His heat and exercise intolerance were attributed to being a non-athletic kid.

“I pushed him to try to do things and got very upset with him when he wouldn't complete a program (like soccer) that I paid for but he flatly refused on finishing out the season,” Rachel said. “I never knew that he couldn't be running on the hot field for an hour like the rest of the boys!”

Rachel gained insight from her mom, who made her realize that if a child could be part of the gang ... why wouldn't he? “Why would a child choose to be different?” Rachel said. “If a child could do something, he will do it; if he cannot, then there is a reason and we should just allow him the ability to be who he is without pushing him to do or be what we believe is right for him.”

The lesson Rachel learned is that we should let our children lead their own way and we should simply guide them. “Pushing a child to do something he/she cannot do is not helping them become the best he can be,” she said.

Community effort

Jacob, who wants to be a psychologist when he grows up so he can help kids, was at his absolute best in organizing Movies for Mito. Rachel had so much anxiety about the event at first. “I didn’t know how he would be perceived,” she said. “But he wanted to do it. It was important to him. And the community has been unbelievably kind.”

When word got out about the event, people approached the Shinders and offered raffle items. The raffle items the family secured included math tutoring, music lessons, personal training sessions, an American Girl Doll, a bike tune-up, several pieces of locally made jewelry, restaurant gift cards, and so much more. 

Local businesses were happy to donate food and beverages. People who couldn’t attend the event donated money. People are still donating.

“It’s beautiful to live in a community like this,” Rachel said.

Raising awareness

Before the movies played, Jacob showed the attendees the short video, “Mito Man Saves the Day,” to help explain Mito. The event has prompted people to ask questions about Mito. At school, one of Jacob’s classmates would always ask him: “Why do you look so tired?” After the event, this boy said, “Now I know why you look so tired.”

Said Rachel, “I feel so gratified and feel so good that his friends understand him better. He was always the one would couldn’t run fast … and now they get him. They are there for him.”

For Rachel, witnessing her son’s Movies for Mito event was surreal. “Everyone was showing so much support for our son!

“While Jacob may have days where he does not have as much strength to do all he wants, he is still able to pick up our family’s spirits with his humor, smiles, and his great big hugs!  We are very proud of him!”

About mitochondrial disease

Mitochondrial disease is an inherited chronic illness that causes debilitating physical, developmental, and mental disabilities. You can be born with it or it can develop later in life. It’s progressive and there is no cure. About 1 in 2,000 people has Mito. Symptoms include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure. Mito is also related to autism, diabetes, Alzheimer’s, and Parkinson’s.