By Barry Matulaitis, Staff Editor
FARMINGTON — Now in its 8th year, Hope With Every Step 5K Run/Walk and Family Festival has a new location and new entertainment.
It will take place Saturday, Oct. 7 at the Farmington Fairgrounds, beginning with the 5K at 8:30 a.m. The Family Festival kicks off at 10 a.m. and ends at 3 p.m.
The community event is held in honor of Josh Brochu, age 15 of Jay, Brooke Brochu, age 12 of Jay, and Emmy Rowles, age 11 of Lewiston. The three children are the only known people in Maine living with Ataxia Telangiectasia (A-T).
A-T is a fatal degenerative rare genetic disease that attacks children, causing a progressive loss of muscle control, immune system problems, and a high rate of cancer, particularly leukemia and lymphoma. There are less than 500 cases nationwide.
All proceeds will benefit the A-T Children’s Project, a grassroots non-profit organization which funds biomedical research and clinical centers for A-T.
Last year, Hope With Every Step was held at Spruce Mountain High School. Organizer Lisa Brochu, the mother of Josh and Brooke Brochu, said the Farmington Fairgrounds “is a location that is well known, has plenty of room for expansion, great parking, and has high visibility from the road. We will be able to incorporate our Walmart tractor trailers and Farmington fire trucks for ‘touch a truck’ along with our bounce houses, obstacle courses, slides, and kids games to put them all in one location to make the event bigger than last year!”
New this year are Warrior Village Airsoft wars and pony rides. The Family Festival highlights include the L-A Harley Band performing from noon-3 p.m., lunch by Calzolaio Pasta Company, a 75′ inflatable obstacle course, Gigaballs, barrel train rides, multiple bounce houses, face painting, and more.
Pre-registration for the 5K begins at 7 a.m. Medals will be awarded and a $50 Visa Gift Card will go to the top 5K male and female finishers.
Breakfast sandwiches will be available. Register online by Sept. 27 to secure an event shirt.
Hope With Every Step has set a fundraising goal of $50,000 this year. Lisa Brochu mentioned that the previous seven events have raised $330,000 since 2010.
Anyone wishing to pre-register, create a free online fundraising page, or get information about the event can go to www.atcp.org/HopeStepMaine. Registration will also be available the day of the event.
Anyone who raised $100 or more will receive a $5 free lunch voucher. The top fundraiser prize is a drone.
Admission and parking are free. Unlimited use of inflatables is $5, kids games are unlimited to play with prizes for $5.
How it all began
Lisa Brochu recalled how the event got started.
“In 2009, both of our children were diagnosed with Ataxia Telangiectasia (A-T) and we were not ready to do any fundraising, we were just trying to wrap our heads around what this rare disease was and what it meant for our children’s future,” she said.
Kim Wick, the sister of Lisa’s husband, Chris Brochu, wanted to raise money to help with whatever associated expenses the children had. She organized a 60-mile walkathon from Pittsfield, Maine to the Brochu’s Jay home.
“After grieving for about six months, we began to focus on raising money for research and discovered the A-T Children’s Project, an amazing grassroots non-profit that supports A-T research and clinical centers,” said Lisa Brochu. “The founders of the A-T Children’s Project call it a project because foundation sounds too permanent and the idea is to find a cure and close it down because no more children suffer from A-T.”
When asked about the progress of research on the disease, she offered, “We are very excited about the current research and trials that are taking place to help A-T kids cope with this disease. One unique thing about the A-T Children’s Project is they have won awards for keeping overhead low and putting the funds raised by families like ours toward research. Approximately 87 cents on the dollar goes directly towards research.”
She said the ATCP is currently working on testing drugs to protect brain cells in the cerebellum. They’re exploring ways to preserve lung health and researching gene editing technology in cells hoping to reduce the severity of the symptoms of A-T.
All three children enjoy the festive atmosphere at Hope With Every Step.
“Josh, Brooke, and Emmy love spending the day with all of their friends that come out to support them on this busy, exciting, and fun day!” said Lisa Brochu. “They understand that while we would do anything for them, we aren’t scientists and don’t know how to cure A-T. They understand that we all work very hard to raise money for research.”
Visit the event’s Facebook page at www.facebook.com/ATmaine