MitoAction Energy Walk & 5K, a well-established annual charity event within the mitochondrial disease community, will take place this year on Saturday, September 12. The event is designed to help raise awareness and funding to support patients who suffer from mitochondrial diseases. In addition to a 5K walk, the event meant to be a fun day for people of all ages and abilities, with last year’s participants sharing their experiences in order to encourage others to participate.
Nine year-old Thomas Schmid is one of the mitochondrial disease patients that crossed the finish line last year and intends to do the same this year. Despite the fact that his disease didn’t allow him to compete in the entire walk, Thomas ran the last 40 yards of the track. “My best memory of last year is all of his teammates from Massachusetts Maritime Academy men’s soccer team along with his friend and neighbor going out to meet him as he approached the finish line and cheering him on as they ran beside him,” said Thomas’ mom, Abby.
“My focus last year was on making sure Thomas had a team to get him over the finish line,” explained Abby, who lives with her family in Marshfield, MA. The boy participated as part of the Team IMPACT, which aims to include children that are not able to play sports and participate in their local teams due to their disabilities. Thomas was also accompanied by his siblings Joey, 7, Penny, 4, and Rusty, 3, the family’s neighbor and friend Dave Kennedy, and the Maritime soccer team, which has supported the family and intends to participate in the walk again this year.
“This team is visible for him. He knows there are many friends and family that care and support all our efforts to keep him at his optimal level of health daily, but he never has seen them together in the same place at the same time. This was that opportunity and we capitalized on it by doing with him what he is not supposed to be able to do — run,” she continued.
Thomas’ dad, Adam, missed the event since he was deployed, but will be participating this year, expanding the support of the event and Thomas’ own individual participation. “Our goal this year is to have as many team members, if not more than last year, while being able to support MitoAction and give back to them for all they do for all of us,” said Abby about the Boston-based non-profit organization MitoAction, which organizes the event and will benefit from the profits.
“MitoAction has helped us find the resources we needed at a critical time; their webpage alone has been a huge reference on a regular basis; and we know they are there if we need them because MitoAction is so much more than an organization, but actual people,” she added. “We are very grateful for that!” Thomas and the Schimd family is only one of the families that benefit from the efforts of the organization, which works to improve the quality of life of patients and families affected by mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives.
Approximately one in every 4,000 people are born with mitochondrial disease, a progressive disease for which there is currently no cure. The disease can be diagnosed at birth or develop later, causing physical debilitation as well as development and cognitive problems, such as poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal problems, learning disabilities, and heart, liver, or kidney failure.
In order to reduce the burden of the disease, MitoAction organizes the MitoAction Energy Walk & 5K annually, gathering walkers and runners together from all over the US. This year, the event will be held at the DCR’s Mother’s Rest in South Boston, MA, with the support of Stealth BioTherapeutics, Courtagen Life Sciences, Inc., ACC Apothecary, Reata, Acton Pharmacy, MitoXCell, In the Pink, Deep River Snacks, and the bPositive Project. More information and registration are available here.
In addition to the walk, the organization hosted the 2015 Mitochondrial Disease Clinical Conference on March 21 at the Ritz-Carlton, Buckhead, in Atlanta, Georgia as part of its ongoing effort to improve mitochondrial disease patient care. The one-day conference and CME course were organized in a collaboration between the organization’s Medical Advisory Committee and the University of Virginia, under the topic “Managing Mitochondrial Disease: Current Trends & Perspectives.”