Delivering the 'Brian's Hope' Message
Two "HOPE" trucks were unveiled at Guilford's East River Energy last week, one of them bearing the logo and web address of Branford's own "Brian's Hope;" the other supporting the message of the Cystic Fibrosis/ Multiple Sclerosis Fund.
Branford's Kelley family, including Dr. Jack Kelley, Jean Kelley and their son (and "Brian's Hope" namesake) Brian Kelley, were delighted to be on-hand for the Sept. 5 "HOPE" truck celebration. The event highlighted another important milestone in a string of successful Brian's Hope efforts supporting adrenoleukodystrophy (ALD) research and awareness: Gov. Dannel P. Malloy's recent signing of a new state law requiring ALD screening in newborns.
Connecticut is the second state in the country to enact such a law, which takes effect here Oct. 1, 2013. New York's law is in effect with testing set to begin Jan. 1, 2014. Connecticut needs to enact some additional pieces of protocol before actual testing can begin, noted Dr. Jack Kelley.
"So the next step to make sure to actually start the screening," he told The Sound. "There are a couple of clauses in law that we have to stay on top of, and those will happen," he said, adding "…what's exciting is that Brian's Hope is now creating a template for other states to bring about the law. We're assuming eventually, in the whole United States, that no one born will wonder whether they have this or not. It will make such a difference in their lives, and their families' lives."
The Kelley family thanks many supporters (among them, Branford-based lobbyist Linda Kowolski and North Haven State Senator Len Fasano) for working so diligently to help the bill pass into law in just six months' time. On Sept. 5, the Kelleys also had the chance to publicly thank the Herzog family for their support through the years, including the moment when Don Herzog, President and CEO of East River Energy, unveiled the "Brian's Hope" logo on a tanker truck which travels far and wide. Since 1984, East River Energy has been a leading full-service energy company to commercial and residential customers throughout Connecticut and its surrounding states.
The Herzog and Kelley families first met as Branford neighbors, with daughters and sons who grew up together. Don Herzog coached Brian's older brother, Patrick, as a youth football coach and knew Brian back "…when he was under his own power," said Jean Kelley. Although he appeared a typical healthy boy up to age six, due to ALD, Brian Kelley lost his sight, speech and ambulation at age seven and is confined to a wheelchair. His sense of hearing remains keen.
ALD is a rare hereditary disease of the central nervous system which appears only in boys in early childhood. They're born missing the enzyme that breaks down long-chain fatty acids. The resulting build-up then leads to a process that destroys myelin in the body (information supplied by www.brianshope.org).
Brian is alumnus of the Branford High School Class of 2011 and was the inspiration for years of successful local fundraising supporting the Myelin Project, with efforts like the annual Hammerfest (returning to the Owenego Inn on Sept. 15, 2013). He then helped to exponentially grow the effort to raise ALD awareness, secure newborn screening for all, and raise funds to support research by literally putting his name on the effort, said his mom.
"What made the change around here was putting Brian's name on it. We've been raising money for the Myelin Project successfully for 15 years, but once Brian took ownership of it, it just took off. He's a pretty courageous leader," she said.
In thanking the Herzog family and East River Energy for showing such visible support of Brian's Hope, Jean Kelley said, "…our ripple logo is actually symbolic of Brian, and the ripple and the awareness and all that he has done, and his courage to spread an awareness and keep the ripple effect going. The law will be his legacy. We've set an example; you've set an example; Connecticut has set an example. We're just blessed to have such a great community and friends."
The 17th Annual Hammerfest Triathlon and Fun Run to benefit Brian's Hope is Sun. Sept. 15, at the Owenego Inn on Linden Avenue, Branford. Visit www.brianshope.org for more information or to download an application. For more information about East River Energy, visit www.eastriverenergy.com
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