The biggest thing for me is awareness. Just to let people know that Mito is a thing; it exists.
BOSTON, MA (PRWEB) August 17, 2013
Becky Allen is in her third year as captain of Team Emma for the MitoAction Energy Walk & 5K. She started the team in honor of her niece, Emma Ryan. This year, for the first time, Emma, her sister Alexandra, and their mom, Melissa, will be traveling almost 3,000 miles from Santa Clarita, CA to participate in the Boston walk in person.
Everyone is ecstatic about it. “The biggest thing for me is awareness,” said Melissa. “Just to let people know that Mito is a thing; it exists.”
The 2013 MitoAction Energy Walk & 5K presented by America’s Compounding Center, an integrative pharmacy, will be held Sunday, Sept. 8, 2013 at DCR’s Mother’s Rest in South Boston, MA. Go to http://www.mitoaction.org/walk to register ahead of time and to find opportunities to volunteer at the event. You can also register on-site.
This annual awareness event attracts 1,100 patients, families, and community supporters. Sign-in begins at 8 a.m., with the 5K kicking off at 9:30 a.m. and the walk at 10 a.m. The 5K covers a flat, scenic course that is appropriate for all levels. Additional festivities run from 10 a.m.-1 p.m. and include a kids’ tent with crafts, games, and face-painting; music; food; awards; and more.
Becky is most excited about her sister and nieces experiencing the excitement of the day. “It’s a celebration and people being there for each other,” Becky said. “It’s seeing how positive everyone is.”
Becky formed Team Emma when Emma was not yet fully diagnosed with mitochondrial disease. “I wanted to do something for her,” Becky said. “It makes me feel like I can participate in fixing her illness.”
The first year, the team consisted of Becky, her dad, and a friend. Each year the team keeps growing and this year will be the biggest Team Emma yet.
Becky lives in Quincy, MA. Melissa (Whitman) and her husband, George (Weymouth), are both from Massachusetts. Since 11-year-old Emma was diagnosed with Mito at age 9, they’ve only been able to travel back once. So, this trip will also serve as a kind of family reunion. Melissa and Becky’s dad, Robert, will be back up from Virginia Beach and their dad’s cousins will be joining him, as will members of George’s family. Melissa posted about the event on Facebook and is generating interest among her Massachusetts friends.
And Emma is creating a poster with photos of some of her Mito friends in California so she can bring them to the walk with her, in a sense.
Melissa knew since Emma’s birth that something wasn’t right. She had gastrointestinal issues from birth. “We spent years trying to figure out the GI issues,” Melissa said. Emma also had a lot of leg pain, was always tired, and frequently ended up in the hospital for the flu and other viruses.
In Melissa’s research, she came across information about mitochondrial disease and contacted Dr. Richard Boles, who diagnosed mitochondrial dysfunction. Becky was also familiar with the disease as she shares office space with Annie Gorham, a South Boston woman who has Mito.
The Ryans are thrilled to be part of this year’s walk and Becky is thrilled to be able to share the experience with them.
The event is sponsored by America’s Compounding Center, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, Bright Horizons, and Diamoto Nutrishare, among others.
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.
Proceeds from the event benefit MitoAction, a Boston-based 501(c)(3) charity that helps families navigate the difficult Mito journey through its comprehensive website, free teleconferences and support groups, individualized advocacy for school services, camp programs, awareness events, and so much more. Its mission is to improve quality of life for all affected by mitochondrial disease through free programs and resources centered on support, education, advocacy, and research. Learn more at http://www.MitoAction.org/.
For more information, email walk(at)mitoaction(dot)org or call 888-648-6228. To register, visit http://www.mitoaction.org/walk/.