Jan Cellucci speaks of late husband Paul’s battle against ALS

Quest for a cure continues with UMass ALS Champion Fund

By Bryan Goodchild and Lisa M. Larson

UMass Medical School Communications

December 09, 2013

In a rare public speech, Jan Cellucci said her late husband Paul, the former Massachusetts governor and U.S. ambassador to Canada, hoped his campaign to fund a cure for ALS wouldn’t end with his death from the disease. Speaking at a Dec. 4 fundraising event for the UMass ALS Champion Fund hosted by the Canadian embassy in Washington, D.C., Jan Cellucci implored the crowd to continue the fight for a cure.

“During Paul’s struggle with ALS, Paul knew right from the beginning that the timeframe from research to effective therapy and a cure was not the timeframe that we were given,” Jan Cellucci said, before a crowd of about 50 supporters, including former Massachusetts Governor Bill Weld, U.S. Rep. James McGovern, U.S. Rep. Richard Neal, former White House chief of staff Andrew Card, and host Gary Doer, Canadian ambassador to the U.S. “It did not deter Paul. He was an amazingly strong and courageous man and Paul firmly believed that Dr. Brown would ultimately succeed.”

Cellucci died June 8, five years after being diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

UMass Medical School Chancellor Michael F. Collins said he pledged to Cellucci that the Champion Fund would grow, and continue to support the work of Cellucci’s former doctor, Robert H. Brown Jr, DPhil, MD, chair and professor of of neurology at UMMS and one of the world’s leading ALS researchers. Dr. Brown also attended the fundraising event.

“In the last conversation I had with the governor before he died, he said, ‘Michael, I want to be sure your efforts are not going to stop just because I’m not there,’” Chancellor Collins said.

Jan Cellucci said Paul was committed to using his final years to further research into ALS.

“When Paul was first diagnosed with ALS, we were both just devastated, yet Paul moved quickly into action,” she said, of his commitment to the Champion Fund. “He immediately saw an opportunity to continue his public service career. I just couldn’t believe it. We were plunging right back into public life just as we had a little bit of time as private citizens. But this effort was very different, unbelievably more difficult environment than just a political campaign.

“Since 2011, many have stepped up to support the Champion Fund: our family, neighbors, childhood and hometown friends, political leaders, the vast, very diverse network of his former political supporters. Paul was so encouraged and inspired by the support of each and every one of those contributions and he hoped that the Champion Fund would continue even after he was no longer able to lead it.”

Hear more from Jan Cellucci in this video from the event.