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9-year-old Mito Warrior on a mission

The Mito Warrior of Fultonville, NY, will be in Boston for his very first MitoAction Energy Walk & 5K this year and hopes to meet other kids just like him.

He couldn’t attend last year’s walk because his friends and family were holding a benefit for him on the same day. Since his family and friends helped him, Ethan Allen, 9, wants to give back and help others. He is raising money for kids just like him who have mitochondrial disease by collecting bottles and cans. He will give all the proceeds to MitoAction on behalf of his team, Mito Warrior’s Platoon, to help Mito families.

The 10th annual MitoAction Energy Walk & 5K, presented by America’s Compounding Center, will be held Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. For more information and to register, please visit www.mitoaction.org/walk.

Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including 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. About 1 in 2,000 people has Mito. It’s progressive and there is no cure.

Ethan’s diagnosis is mitochondrial disease, complex IV. He has severe asthma, learning disabilities, low muscle tone, as well as neurological, heart, brain, and sensory issues. He’s been sick most of his life but the Mito diagnosis didn’t come until February 2012.

“He looks normal on the outside, but he is sick on the inside,” said Ethan’s mom, Jamie. “But he always has a smile on his face. He’ll never say he’s not feeling good. He always says, ‘Never give up.’”

Ethan has collected bottles and cans before, so he thought it would be a good fundraiser for his MitoAction team. He has partnered with the Fultonville Redemption Center, so in addition to helping other Mito kids, he’s also helping a local business that just started up this year.

“He has such a good heart,” Jamie said. “He just wants to help others.”

The Allen family, including mom Jamie, dad Robert, sister Madison, and grandparents Mary Ellen and Vernon Francisco, have been busy helping Ethan raise money for MitoAction and awareness about mitochondrial disease. Ethan has set up information booths at the Fonda Speedway and at an Amsterdam Mohawks playoff baseball game. At each event, Ethan puts up a table with information about mitochondrial disease, the MitoAction walk, and his bottle and can drive, as well as a donation jar and the science project he did for school on mitochondrial disease. Ethan and Jamie will also be talking to the organizers of a local fair to see if special collections bins can be set up for Ethan’s drive.

Ethan has also become a bit of a local celebrity, appearing on radio and TV and in newspaper articles talking about his project, Mito, and the MitoAction walk! The usually shy boy has really opened up since starting his drive because he knows that raising awareness about his disease is vital.

Ethan’s big collection event, held on Aug. 2 at the Fultonville Redemption Center, included a bake sale, a lemonade stand, a bracelet sale, and more. It raised almost $1,000, bringing his total as of Aug. 2 to $2,543.15 for Mito Warrior’s Platoon. And he’ll keep going!

Ethan’s initial goal was to raise $1,000 for MitoAction by the time of the walk. But he easily surpassed that. So Jamie and Robert decided to give Ethan incentives. At $1,000, he wanted his grandmother, Mary Ellen, to shave her head just like his. And she did!

At $2,000, Jamie and Robert will get matching tattoos. They are leaning toward a Superman symbol in bright green (Ethan’s favorite Mito color) with E in the middle for Ethan’s nickname. Incentives are in the works for hitting $3,000.

The whole Allen family plans to come to Boston every year for the walk. They also have a lot of virtual walkers who can’t make it to Boston for the day so they’ll walk with them in spirit. The Allens also plan to host their own MitoAction walk in the Fultonville area each year. MitoAction holds a special place in the Allen family’s hearts. They got a ton of information and help from www.mitoaction.org for Ethan’s school plan.

“MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.”

Like the 1,200 patients and families who attend the annual MitoAction walk, Ethan is looking forward to meeting other people just like him and the sense of community, support, and camaraderie that brings.

The walk is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks.

Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at www.MitoAction.org.

For more information, email walk@mitoaction.org or call 888-648-6228. To register, visit www.mitoaction.org/walk.

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