ALS Patients Find Haven At MGH Clinic
MDA Has 37 ALS Clinics Nationwide

POSTED: 2:17 pm EDT August 29, 2007
UPDATED: 2:29 pm EDT August 29, 2007


BOSTON -- An estimated 30,000 Americans have ALS. Known as Lou Gehrig's disease, ALS attacks the nerve cells, weakening muscles until they cease working completely.

The Muscular Dystrophy Association maintains 37 ALS research and clinical care centers at major medical institutions across the country. One is in Boston at Massachusetts General Hospital.

"I'd say because this is a horrendous disease and it can affect anyone at any time, even though it is quite rare," said ALS patient Nan Urban.


For people diagnosed with ALS, finding doctors who understand their disease can be a challenge. MDA-sponsored clinics like the one at Mass General can be a godsend to patients and their families.

"We have a multidisciplinary clinic here. And what that means is we have a group of health care professionals who are interested and specialize in ALS and help us take care of our patients as best we can," said Dr. Merit Cudkowicz, of the Mass. General ALS Clinic.

Urban drives from Portland, Maine, for the convenience the clinic provides.

"It's helpful to be at one place and have everything taken care of. Because it's exhausting to go from doctor to doctor to physical therapist. This way you go, it's a one-shot thing, and it's very helpful," said Urban.

At the clinic, Urban can see all the specialists she needs in one day.

"We have six physicians, a nurse practitioner, two physical therapists, speech therapist, respiratory therapist and a occupational therapist," Merit said. "When the people that we follow come here, they sometimes see everybody in the clinic, sometimes just a few, but it allows us to take care of all their symptoms. And it also provides a resource to the patients when they aren't at the clinic that it's someone they can call if they have any new issues."

In addition to treating patients, researchers at Mass General are also searching for a cure.

"So right now, there is one clinical trial that is ongoing. Clinical trial meaning a new therapy that is being tested in people with ALS. That's with a drug called trexciclapso. There are at least three more new possible therapies that will be available towards the end of the year to try in people with ALS," Merit said.

"This clinic gives you hope when, I think, if you think about this disease, you know what's down at the end of the line. It's not like I am going to get better. Things are going to get harder, but there is always that hope that maybe they'll discover something and this is where it's happening. So if you are going to have hope, this is the place to be, I think," Urban said.

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