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Fighting Huntington’s Disease through hope and awareness

Families raised funds for the Team Hope Walk

Sarah Preis

Features Editor

The Huntington’s Disease Society of America held its annual Team Hope Walk at UMBC. Participants fundraised to find a cure and help families affected by the disease

As small groups of people gathered around the tables set-up on the Commons Terrace, clouds rolled in and a harsh wind blew. The morning of Nov. 2 was a cold one — almost unbearably so — but the extreme weather couldn’t keep the organizers, volunteers and participants of the Team Hope Walk from their goal: raising funds and awareness for the Huntington’s Disease Society of America.

Huntington’s Disease is a neurodegenerative condition that manifests itself in mid-adulthood. People with the disease display a wide array of physical, cognitive and psychiatric symptoms including involuntary movements, difficulty focusing and depression.

Laura Ford, whose husband has Huntington’s Disease, said, “His symptoms are mostly cognitive and psychiatric … but that’s sometimes the hardest thing to get disability for.”

The HDSA is currently working to persuade the Social Security Administration to acknowledge these debilitating, non-physical symptoms. Currently, it can be extremely difficult for people with Huntington’s Disease to receive disability benefits unless their physical symptoms are severe.

The HDSA’s motto is “Help for today, hope for tomorrow.” Families can get connected with support groups, educational resources and physicians through the group in order to help those already affected by the disease, and fundraising and research efforts provide hope that a cure will be found.

A main goal of the HDSA is awareness. Brenda Clemens, an attendee whose daughter had Huntington’s Disease and passed away last February, said, “Get it out there, let people know! Huntington’s is a very, very bad disease and there’s no cure for it. There’s no stopping it.”

Huntington’s Disease is known as the “quintessential family disease” because there is a 50% chance that parents who have it will pass it on to their children. Many hope that research will lead to a cure to help patients in the future.

For Clemens, Ford and others, the hope for a cure for younger generations is anything but an abstract idea; some of the children in their lives could potentially have the condition. “We’re hoping that the kids don’t have it, but they haven’t been tested yet,” said Ford.

It is up to the children, however, to decide whether or not to be tested for Huntington’s Disease. Because young people may be pressured into it or may not understand the full risks and benefits of being tested, testing for the disease is prohibited unless the patient is over 18 or, in special cases, if juvenile onset Huntington’s Disease is suspected.

At Sunday’s event, a table of bubbles and other toys was set up for the kids in attendance. The children ran around and played amidst clouds of bubbles, seemingly oblivious and carefree. The adults, however, discussed the harsh realities of living with the disease and caring for family members.

Between participating families and volunteers, roughly 50 people turned out to walk around the UMBC campus, raise money for the HDSA and talk with other people who have been affected, directly or indirectly, by Huntington’s Disease.

Many volunteers were affiliated with UMBC’s social work program. Tricia Dove, a junior social work major, said, “being a social worker, I’m going to be working with a variety of people, so the more I can get out and help the community the better.”

Dove credited the Social Work Department’s listserv with informing her about this opportunity to volunteer. Students who are interested in other volunteer opportunities should sign up for the listserv or check the UMBC Social Work Student Association’s Facebook page.