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These volunteer efforts spread awareness!

 

 

Nicole Dion came to a stunning realization when her family started its Mito journey for daughter Natalie.

Nicole discovered there was little knowledge about mitochondrial disease, even in the medical community, and she needed to do something about that. She needed to raise awareness.

So she volunteered her time and efforts to create the Mito Mad Hatter 5K in Sacramento, CA.

This September was the second annual Mito Mad Hatter, but the first year Nicole has teamed up with MitoAction. The Mad Hatter is just one satellite event run by volunteers on behalf of MitoAction. The Castle family organizes Cooper’s Race, A MitoAction Energy Walk & 5K Race in Kingsport, TN. And Kim and Gareth DiPaolo have organized Gareth’s Get Up & Go for Mito in Bethlehem, PA, in the past.

MitoAction has designated November as its Volunteer Appreciation Month because the organization is so thankful for all its wonderful volunteers.

“I am moved by the passion of the families and friends who approach us about hosting an event in their community to raise awareness about mitochondrial disease while donating all the funds to MitoAction,” said Susan Stover, MitoAction’s Events & Development Director. “In many cases, these families are already working overtime caring for a loved with Mito and then they take on the task of hosting a walk or 5K.”

Nicole and her husband, Mike, knew nothing about putting together a 5K but they, along with a group of friends, did it anyway.

Nicole believes that if she is not part of the solution, she is part of the problem. “If I’m upset because no one is aware of mitochondrial disease, but I don’t do anything about it, I am part of the problem,” she said. “What can I do? I help where I can and would love to be able to do even more.”

“It’s a blessing to be able to volunteer and be part of working toward a solution,” Nicole said.

Nicole is happy to volunteer for MitoAction. She likes what MitoAction stands for, from education and awareness to advocacy and their “human touch.” She said, “MitoAction is a nonprofit organization that also has a family feel about it. There’s a warmth there. I am thankful to be working with them and appreciate all they do for the Mito community.”

The volunteer duties Nicole, her family, and friends undertook included logistical planning, such as acquiring permits, securing a location, designing the route and event layout, reaching out to sponsors and donors; marketing; coordinating the actual day; and of course, remembering all the little things that come with doing an event such as this.

The biggest challenge for Nicole was having a Mito child and all that goes with that while putting together such a big event. But Nicole always finds a way … and has a great group of friends helping her! Almost 160 people attended the second annual event and so much awareness was raised!

"One of the things that was awesome about our event this year was having so many people who just happened to be walking/running in the Capitol area stop and ask us why we were there,” Nicole said. “I lost count of how many people we shared with about Mito."

Nicole says that volunteering is “work” and a time commitment, but it’s a blessing. “When you give your time for something close to your heart that you feel led to do, and you see the results, it’s not work. It’s fun!”

 

 

The Castle family hosted their third annual Cooper’s Race in September.

“The biggest thing is bringing everyone out and raising awareness,” said Chris Castle, Cooper’s dad. “We are educating, educating, educating.”

The Cooper event annually draws about 300 people. The family -- which is supported by extended family, a close-knit and longtime group of friends, the church community, and more – volunteers their time soliciting sponsors, organizing games and activities, promoting the event, and so much more.

According to Chris, “As a result of the Lord touching Cooper, blessing us with the gift of gab, the privilege of meeting MitoAction, and the opportunity to share with other families … I think we’re doing a good job of communicating to doctors and telling the community it’s a real disease. If we can help one person, it’s worth all the labor.”

These volunteers help in a big way to move forward MitoAction’s mission of raising awareness.

“In addition to doing an amazing job bringing the Mito community together in their area, they bring a very personalized touch to their event, making it unique and their own all while educating more and more people about mitochondrial disease,” said Susan. “I am honored to work with these families.”