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Hope Walk to take place in Cape Coral for Huntington’s Disease

Organizers still seeking sponsorships, accepting raffles prizes and donations; walkers and volunteers sought

September 26, 2019
Fort Myers Beach Bulletin, Fort Myers Beach Observer

The Southwest Florida Team Hope Walk is coming to the area for the first time, thanks to the Huntington's Disease Society of America South Florida Chapter.

"It's been going on around the country for years. This will be the first one in Southwest Florida. We have been doing one in Tampa and have got a great response, but a lot of people are in the Fort Myers and Cape Coral area," Walk Coordinator and HDSA volunteer Jamie Lattin said, adding that sometimes it is not in the cards for some participants to travel long distances. "We are super excited to bring it down south a little bit."

The fundraising event for the Southwest Florida Team Hope Walk will take place from 10 a.m. to 1 p.m. Saturday, Oct. 19, at Jaycee Park, 4125 S.E. 20th Place.

"It is not really an athletic based walk event. It's a community outreach, everyone coming together. People participate as teams - compete team to team for fundraising goals," she said, adding that the teams are not only pushing to win, but it's an event that "pushes the awareness level in the local community."

For more information, or to join the effort, visit www.hdsa.org. Individuals can search the events by state and area. Those who cannot make the event, can make a donation, or register as a virtual walker and still receive a T-shirt.

"We are still accepting sponsors, in-kind donations, raffle prizes and volunteers," Lattin said.

The event will include raffles, kids activities, face painting and some nice donations for food and to keep everyone hydrated.

Lattin said Huntington's disease (HD) is a genetic disorder, which deteriorates a person's physical and mental abilities. An individual usually experiences the disease as they age. Although it's different for everyone, she said it happens between the age of 40 to 50, during the prime working years

HDSA provides a great deal of support for both the individual affected by HD, and their caregivers. There are national conventions that offer resources, which includes how to apply for Medicare, and what medications are needed.

Lattin said her father had HD and he did not show any signs until his late 40s. Her grandmother, also had HD, and displayed signs during her late 60s.

A child has a 50/50 chance of inheriting the gene when their parent is diagnosed with HD. She said she has been tested positive for pre-symptomatic HD and goes for yearly testing.

Lattin is part of a big pool of candidates that is helping to speed along the discovery of therapies that can help slow down, or stop HD.

"With Huntington you need to go and get genetic testing done. So many times it can be misdiagnosed as Parkinson's, dementia, general depression and anxiety," she said.

There are approximately 30,000 symptomatic Americans, and more than 200,000 at risk of inheriting HD.

"The good thing is they have identified the gene that causes HD. As soon as we develop a cure, they will be able to take that method and apply it to other neurological diseases. There are a lot of people working very hard," Lattin said, adding that there is constantly new information.

Lattin began volunteering for HDSA about 10 years ago, as soon as she found out that she had a positive gene at 24 years old. She said she did not want that information to affect her in a negative way, so she began making some important life choices.

Lattin, who knew she had to stay home with her dad, got a master's degree, so she could have a sustainable career.

"I wasn't able to do as much because I was caring for my dad. He passed away just over two and a half years ago," she said, which has further encouraged her to help raise awareness in Florida through the Hope Walk. "In Florida we are trying to catch up. There is a little bit of a void in representation. We are trying to provide more resources in the south.

There was a bingo for charity event at Millennial Brewery to raise awareness about HD.

"When you feel you are alone and no one knows what you are going through, it is challenging," she said.

 
 

 

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