The Alpha-1 Channel

Ed Brailey, nationally known Alpha-1 activist and leader, was buried Saturday morning with bagpipes playing in the background and a covering of new-fallen snow making the the burial site appear to be in the clouds. Burial was at East Lyme Cemetery, Connecticut.

He was remembered as a man “given eight extra years to be with all of us… he paid forward the gift of life many times over,” in the eulogy delivered by John Walsh, President & CEO of the Alpha-1 Foundation. “He’ll always be our inspiration and hero,” Walsh said.

Ed Brailey “in uniform” as leader of Team Brailey at the Escape to the Cape bike trek on Cape Cod, September, 2008.

Brailey died Jan. 3 in a hospital at the University of North Carolina in Chapel Hill. Brailey, 58, who received a single lung transplant at age 50 in 2002, had been hospitalized in December.
He had been a member of the Alpha-1 Association Board for five years and became Chair in 2010.

In Brailey’s honor, “Team Brailey” will lead Team Alpha-1 at the 2011 “Escape to the Cape” Bike Trek this fall, said Fred Walsh, longtime member of Team Alpha-1 and participant at the annual bike trek. “Team Alpha-1 will be calling itself the Brailey Brigade this year in Ed Brailey’s honor,” Walsh said.

“Ed was a dear friend to so many of us. In fact, probably most people that Ed ever met became his friend,” John Walsh had said after Brailey’s death. “He dedicated himself, many times at the risk of his own health, to help other Alphas in raising funds for a cure, creating awareness and providing the leadership to make a difference. Ed had ‘a fire inside’ and set an example for us all with his selfless commitment to the community. He was a passionate advocate and created a legacy of sharing and leading. We will miss our dear friend and we embrace JoAnne as her extended family. We will be here for her as Ed was here for all of us.”

Brailey was for many years a firefighter in his home town of East Lyme. After undergoing his lung transplant in May 2002, he became involved in fundraising efforts with “Team Brailey,” leading a team of firefighters, police officers and friends to many “Escape to the Cape” bike rides on Cape Cod, Massachusetts.

He and his friends also held events such as spaghetti dinners to raise funds for the Alpha-1 Foundation’s research programs.

He had served as the support group leader for the Alpha Nutmeggers of Connecticut for nearly a decade with the help of his wife JoAnne. The Braileys moved in 2010 to North Carolina.
The Braileys also raised funds for the Alpha-1 Association through spaghetti dinners, silent auctions, and raffles. He had been a frequent advocate in Washington for Alphas and others with rare and chronic diseases. He was also a long-time volunteer for the New England Organ Bank, and both Ed and JoAnne Brailey also served as volunteers for the COPD Foundation’s C.O.P.D. information line.

“Ed was a dedicated leader and renowned citizen of the Alpha-1 community,” said Marlene Erven, executive director of the Alpha-1 Association. “His mission in life was to improve the lives of Alphas. He loved being a peer guide to other Alphas and helping others in the community.”
When profiled in the Alpha-1 Foundation’s magazine in 2004, Brailey talked about his fundraising dinners. “People don’t come for the spaghetti,” he said. “They come for the cause. I can’t tell you how much that moves me.”

His first foray into fundraising came barely four months after his transplant. Five firefighter friends and two state troopers from Connecticut agreed to pedal in the “Escape to the Cape” bike trek in September. 2002.

“I took my wife’s Christmas card list and sent letters to friends, family members, and everyone we knew, telling them my story,” Brailey said. “I had to do something to give back what had been given to me. I was truly amazed by the response.”

He mailed nearly 400 letters, the team cycled 160 miles, and together they raised more than $20,000. “We sent all of the money we raised to the Foundation,” Brailey said. “One hundred percent of it went to research.”

He explained his attitude to an interviewer:“I got a transplant, but I’m still an Alpha. I still have this disease. There’s no way I’m going to turn my back on other Alphas. After I had my transplant, I wrote a letter to my donor’s family. I said, I know you’ve suffered a terrible loss. But I want you to realize the gift you’ve given me. I can play basketball with my grandkids. I will never take a gift like that for granted.”

In lieu of flowers, the family requested contributions to the Alpha-1 Foundation, 2937 SW 27th Avenue, Suite 302, Miami, Fl. 33133 or the Niantic Baptist Church, 443 Main St., Niantic, CT 06357.