In memory of her father Local teen makes ALS research, awareness her mission

By Jessica Benson
Correspondent


She's already raised $100,000 for research into Lou Gehrig's disease. And she isn't even out of high school yet.

Caitlin Shelburne started her fundraising drive when she was 13, shortly after her father, Richard, died of the disease, medically known as amyotrophic lateral sclerosis, or ALS. Now the 17-year-old, who recently moved from Newburyport to Byfield with her mother, brother and sister, is getting recognition for her dedication to the cause.

Shelburne was honored this week as the finalist for the Young Philanthropist Award from the Women in Development of Greater Boston, which supports women who work for organizations and businesses relying on grants and donations for funding. The award is meant to inspire a new generation of philanthropists.

Shelburne, along with the Lowell teen who won the first-place award, was picked from 20 nominees from across the state.

"I had no idea I was even nominated for it," Shelburne said. "It's exciting."

The money Shelburne has raised has gone to the Angel Fund, an organization that supports research into ALS done by Dr. Robert H. Brown Jr. at Massachusetts General Hospital in Boston.

So far, there is no cure for ALS; it is always fatal. Sufferers slowly lose control of their muscles until they die of respiratory failure, a progression that often takes several years. Shelburne's father had the disease for four years before he succumbed to it at age 42.

Shelburne said that while ALS is, without doubt, a terrible, dreaded illness, it's not as well known, or as well researched, as other diseases.

"It's one of those diseases that's not in the limelight, like cancer," she said.

Ann Hadley, chief development officer for the Angel Fund, estimates that Shelburne has raised more than $100,000 for the organization. Of that, $35,000 was netted during Shelburne's first event — a walk in Newburyport when she was an eighth-grader.

"To organize a whole walk in memory of her dad was just phenomenal," Hadley said. "It really was a nice event."

Hadley, who has known Shelburne since the walk, said she continues to be impressed with the teenager as she's watched her grow up.

"She's just an amazing young woman," Hadley said. "She just sparkles."

In addition to raising money for the Angel Fund, Shelburne has put together events to raise awareness of ALS. Three years ago, she was able to get Red Sox pitcher Mike Timlin, who lost his mother to ALS, to give a talk at Pingree School in Hamilton, where she is a senior.

She also began a branch of the Angel Fund specifically geared toward younger people. Called the Little Angels, the organization has allowed her to connect with other teens who have lost a parent to the disease.

Shelburne said it's been nice for her to share that experience with others who went through the same thing. It's also reaffirmed her commitment to fighting ALS.

"It gives you that motive to keep on raising money," she said.

Next year, Shelburne will take her mission with her to the University of Vermont, her father's alma mater. She will study history or English and spend her free time organizing ALS-related events. She already has plans to start a Little Angels chapter at the school, and perhaps organize an event involving the community of Burlington, Vt., where the school is located.

Burlington, after all, is where Shelburne's father came from and where his parents still live, so she's hoping people there will be receptive to her message.

"People in Burlington care about this kind of thing," she said.

Ultimately, Shelburne is hoping that the research she has helped fund will eventually uncover a cure for ALS. But until then, she's determined to keep educating people about the disease.

"Kind of my passion behind the fundraising is to spread awareness," she said. "And for people to know how much of a devastating illness it is."


New foundation to fund alternative ALS treatments

Sufferers of ALS now have a place to turn if they want to try alternative therapies that their insurance companies refuse to reimburse.

Newburyport resident Linda Paulhus, whose son has ALS, recently teamed up with a nurse from Waltham, Carole Bergeron, to form ALS Northeast Trust, a nonprofit organization dedicated to providing ALS patients with new treatment options.

Paulhus is a proponent of alternative treatments, since for some ALS sufferers, traditional medications can cause side effects, such as liver disease.

"They want to be treated in another manner," she said. "It's overdue."

But alternative therapies are not typically covered by insurance.

"Everything is out of pocket," Paulhus said.

That's where the trust comes in. ALS patients can apply to the trust for reimbursement of these costs.

The trust hopes to eventually start up a Web site, a support group and other services for ALS patients.

Right now, Paulhus and Bergeron are still collecting donations, which can be sent to ALS Northeast Trust, 26 Union St., Newburyport, MA 01950.

— Jessica Benson, correspondent

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