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Saturday’s Barn Dance & BBQ to honor local kids, raise money for A-T research

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Josh Brochu and Brooke Brochu, both of Jay, and Emmy Rowles, of Lewiston.

LIVERMORE – Organizers behind the annual A-T Children’s Project fundraiser are planning some big changes for this year’s event, which takes place just a few months after receiving hopeful news regarding a new gene therapy for the rare disease.

For the past eight years, the Hope With Every Step festival has been held in honor of three children: Josh Brochu, 15, and Brooke Brochu, 13, both of Jay, and Emmy Rowles, 12, of Lewiston. They are the only three known people in Maine living with Ataxia Telangiectasia, or A-T, a fatal degenerative rare genetic disease that causes progressive loss of muscle control, immune system problems and a strikingly high rate of cancer, particularly leukemia and lymphoma. Only a few hundred cases of A-T have been reported nationwide.

Organizers say that the past events have raised $375,000 to fund research and clinical trials in the search of a cure to A-T. This year, as the now-teenagers have outgrown bounce houses, the event will change to a Barn Dance and BBQ, to be held tomorrow, Saturday, June 23, presented by Boothby’s Orchard and Farm in Livermore.

The event at 336 Boothby Road in Livermore will feature a live auction, raffles, live music and, of course, a family-style barbecue with smoked pulled pork and barbecue chicken beginning at 4 p.m. At 7:30 p.m., a 21-plus Barn Dance featuring the classic rock/country of The Veggies will be held.

The Barn Dance and BBQ takes place during an exciting time for those invested in  finding a cure for A-T. According to the A-T Children’s Project, a new gene therapy approach called “antisense oligonucleotide” or “ASO” therapy may be able to produce the functional protein missing in the cells of children with A-T.

“I can’t be muted in my excitement today, because we may actually be able to stop the brutal disease process in at least one or two A-T kids this year,” Brad Margus, the volunteer chairman and founder of the ATCP wrote earlier this year.

The ATCP will be funding a $1.8 million gene therapy trial for a child with A-T this year.

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2 Comments

  1. My family knows all three of these young adults and we have attended many of the festivities to honor and support them. If you are looking for a fun and worthwhile event to attend this summer with your family this is it!. Josh, Brooke and Emmy will be there and you and your family will be helping to further the research to stop A-T.

  2. This is going to be a very fun event to help Brooke, Emmy and Joshua. The parents of these children have been amazing in supporting their families. While trying to keep up with medical appointments, they also try to raise funds through grass-roots efforts. Because there are so few children in the Country with A-T, it is through efforts such as this event that funds are raised for research. Can’t wait to be there for support and also to have a wonderful time as always. Love you, Brooke, Em, and Josh.

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