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Boston Marathon Runner Supports an Association for CFS

  [ 16 votes ]   [ Discuss This Article ]
www.ProHealth.com • March 28, 2002


By Neil O'Callaghan, Times Sports Editor

A national association for Chronic Fatigue Syndrome has one runner supporting it in the Boston Marathon. But for this Needham-based non-profit group, that seems about par for the course.

As co-founder and Needham resident, Gail Kansky explains, "Whoever volunteers to do anything in this organization, if your volunteer, you're the chairman."

Kansky is talking about Jennifer Dominguez, a college student and marathon runner from Wheaton, IL, who tracked down the association for CFS via e-mail. Dominguez had watched her mother suffer from the effects of CFS and wanted to help. This will be Dominguiz' first year running for the organization.

"She said she had just been researching differenent national organizations and was impressed with ours, I guess, because every penny donated to research actually goes to research, nothing is set aside to
pay employees," Kansky said.

Kansky helped to found the association for CFS in 1997. She
was president of a state support group for CFS but the state decided it was
no longer going to fund research in 1997. So Kansky decided to strike out
on her own and describes the group's efforts as highly successful since
then."

"You get angry enough that nothing is being done," said Kansky.
"In my case, I saw my daughter getting progressively worse
and seeing research really being stymied. You feel you've got to do
something and it's time you stopped waiting for others to do it and do it
yourself."

Kansky, whose daughter is now in her 30's, talks about her organization
in small time numbers, but the foundation has grown in leaps and
bounds. When it was birthed, it started with a couple hundred
patients, but now helps almost 5,000 CFS patients internationally.

"We really don't have an office, it's in my house. I travel with
it," said Kansky. "We manage to get a lot done though. It's amazing what
an organization that's really determined can get done...The organization started out on my dining room table."

According to Kansky, this central nervous system dysfunction can see abnormalities on levels of physical and cognitive areas. It is worsened by activity that would have been of no consequence prior to the illness onset.

It is a systemic disease with many features, but characterized by an overwhelming fatigue, sleep disorders, autonomic dysfunction, cognitive dysfunction, endocrine dysfunction and sensory dysfunction. It is often misdiagnosed as multiple sclerosis. It's symptoms are also similar to AIDS as well. Kansky has been diagnosed with the illness as well. She said there
really is no one treatment, all you can do is treat the symptoms. "If
you're having migraines from this, they'll treat the migraines. If you're
having seizure activity, they'll try to treat the seizures," said Gail. "But
they've found nothing to treat the main features of the illness that is
involved."

Within a year, the short-term goal of the organization is to determine
the dysfunction's main cause. "We know that's not going to be the
end," said Kansky. "We know we're going to have at least one more nut to crack,but once we get it all done, our main goal is to go out of existence because we don't have a reason to exist."

Dominguez has sent out fund-raising letters to about 100 people and
businesses looking for support. When she wanted to know what the goals
of the association for CFS were, she became even more enamored. "When we told her the goal was to go out of business, it impressed her even more," said Kansky. "Her mother has been suffering from this for years, so she's seen first-hand how hard it can be."



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