Different group plans marrow donor search

By MICHAEL CLEVELAND
New Hampshire Union Leader

MANCHESTER – As the investigation continues into the Caitlin Raymond International Registry’s bone-marrow donor drives and billing practices, a different organization is planning its own drive and hopes the controversy won’t affect the turnout.
“I would hope it doesn’t have an adverse effect, said Peter Sullivan, a Manchester attorney who is helping the Love, Hope, Strength Foundation organize a concert Jan. 29. “Most of the people involved in the field of oncology and health care are absolutely the best, most decent people you can meet. I think what we saw was an unfortunate exception rather than the rule.”
The Love, Hope, Strength Foundation was founded in 2007 by Mike Peters of the Welsh rock band Alarm and James Chippendale, president of CSI Entertainment, both leukemia survivors.
Several months ago, Sullivan went to an Alarm concert at the Tupelo Music Hall in Londonderry.
Leader singer Mike Peters put out a call for people to sign up for a bone marrow registry. Sullivan did, and now, as a volunteer for the U.S. affiliate of the organization, he is spreading the word about a concert to increase awareness of the need for marrow donors.

“It’s a way to give back to someone whose music has always meant a lot to me,” Sullivan said Monday.
The concert, at The Jam Factory, 1211 Elm St., Manchester, will feature local acts. It is scheduled for 7 p.m. on Saturday, Jan. 29.

Registering as a bone marrow donor will be free at the concert, Sullivan said.
The Caitlin Raymond International Registry, which billed insurers as much as $4,000 for bone marrow testing, sparked an investigation after the state’s Consumer Protection Bureau received a “steady stream” of complaints about questionable sales pitches used during donor drives. Senior Assistant Attorney General James T. Boffetti said last week that people were “outraged and upset by the misinformation and, in some cases, just pure deceit that was involved in enticing them to be a donor.”
Love, Hope, Strength Foundation Executive Director Shannon Foley, in an e-mail response to the New Hampshire Union Leader, said that the foundation has registered 9,000 people in the U.S., “resulting in almost 50 potentially life-saving matches.”
“To register to become a bone marrow donor can cost anywhere from $60 to $100,” Foley said in her e-mail. “We at Love, Hope, Strength are fortunate to have partnered with the largest marrow registry in the states, known as DKMS (which) covers 100 percent of the testing fees.”

On its Web site, DKMS describes itself as the largest bone marrow donor center in the world, with over 2.5 million registered donors.

Foley said that those who register can be sure that their insurance won’t be affected because “we do not ask for insurance information.”

She and Sullivan, however, both said that donations to help with costs would be welcome.

In her e-mail, Foley said that LHS has hosted nearly 200 bone marrow drives at concerts, sporting and community events, something that Sullivan appreciates.

“What I like about them,” he said, “is that they tend to do drives at non-traditional locations.”
The Jam Factory, on its Web site, is touting the Jan. 29 concert as “excellent music for an excellent cause,” and said performers will include Slang of Ages, Vintage Gold Muse, Andy O’Brien, Chris Dembro and Mark Kopko (of American Bred).

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