Every year, Rita Cerruti makes more than 300 mitochondrial disease awareness ribbons to hand out at the MitoAction Energy Walk & 5K. And every year, they are gone in minutes!
It’s just one way Rita, 82, a lifelong crafter, raises awareness about the disease that affects her daughter, Lisa, team captain of LC’s MitoBusters. “Making these things is my way to raise awareness,” Rita said.
Both women are looking forward to the 10th annual MitoAction Energy Walk & 5K, presented by America’s Compounding Center, to 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/energywalk.
“I’m looking forward to seeing the same people and the same teams,” Lisa said. “My favorite thing is meeting families and other patients and seeing the teams.”
Lisa, 38, who was diagnosed with mitochondrial cytopathy with dysfunction of the electron transport chain connectors 1, 2, and 3 at age 29, has had a rough summer. She has spent about five weeks in the hospital because her whole body locks up. Lisa is hoping she’s on the upswing now and will be well enough to attend the 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.
In Lisa’s case, she thinks the Mito was dormant until the Hepatitis C vaccine triggered the disease. After Round 1 of the vaccine, Lisa started experiencing headaches. Two weeks after the second dose, she couldn’t walk and the journey to a diagnosis had begun.
The Cerruti family knows that raising awareness about Mito is vital. When Lisa was diagnosed in 2005, the family had never heard of Mito. After the diagnosis, Lisa’s sister, Sue Kneeskern, started researching Mito. Sue is the one who told the family about the MitoAction walk and LC’s MitoBusters was born.
“It was devastating when Lisa was first diagnosed,” Rita said. “She’s still not doing that well. We do the best we can.”
Rita makes the ribbons with plastic canvas and yarn and works on them everywhere. The ribbons are always a conversation starter. “People see her making them and they ask her about it,” Lisa said. “She always brings a finished ribbon to show people what she’s making.”
Rita, who works in many craft mediums, including crocheting, beadwork, knitting, and needlepoint, also creates beautiful handmade Mito items that appear in the walk raffle, including afghans, sweaters, and home accessories. She is currently working on a shawl with a pocket.
A Mito Man figure, created by Lisa and Sue, appears at every walk to lead the LC’s MitoBusters team. He’s a goofy, funny guy on a stick. “We bring him out for every walk,” Lisa said. The team also goes all out in the accessory department, from green hair and wigs to jewelry, feather boas, and anything else they can think of. They often win the Team Spirit Award at the walk!
“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.”
Rita looks forward to talking with different people and offering a kind word. “I encourage people as much as I can; I try to lift up their spirits. A kind word goes a long way.”
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.