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May is Huntington Disease Awareness Month

Help Raise Awareness!

May is Huntington Disease Awareness Month, when we focus on raising awareness for Huntington disease. Join us this May and spread the word about HD. Together we can make a difference!

As part of our 2015 May Awareness Campaign, we are profiling members of our community from coast-to-coast, highlighting who they are and how they chose to raise awareness in their communities and beyond. We invite you to read their stories and see, for yourself, how they choose to educate Canadians about HD. Please join us on facebook and twitter to congratulate and thank these individuals for their courage, dedication and support.

Rich Wheeler: Facing Life’s Curveballs
Meghan Andrews: Capturing the Trials and Triumphs of HD
Cindy Moore: “Doing Whatever I Can”
Hedley Cullen: “Hopeful for a Cure”
John Stainsby: Finding Inspiration from Others
Marie-Claude Foisy: Adopting the Huntington’s Cause
Marion Genoe: Opening the Closet

Rich Wheeler: Facing Life’s Curveballs

Rich and Ruby Wheeler

Every hour on the hour throughout his work day, Royal Newfoundland Constabulary Sergeant Rich Wheeler calls home to make sure his wife is OK. Ruby has Huntington disease (HD), a fatal hereditary disease that is slowly destroying parts of her brain. Right now the 50-year-old can still manage on her own, but she is a little unsteady on her feet and has cut herself a few times chopping vegetables.

So Rich worries. He calls. And whenever he can, he pops home at lunch to see how she is doing.

The couple knew this day might come. Because Ruby’s dad had the disease, she and her siblings each faced a 50:50 chance of inheriting the fatal gene. As it turned out, Ruby lost that coin toss.

So these days, Ruby has been forced to quit working. She and Rich wonder whether their 24-year-old son has inherited the gene. And they know that if he has children, Ruby probably will not be around to see them grow up. “We live one day at a time,” Rich says.

They focus their energies on raising money to fund services for people with HD and to support research. “It is our hope that a cure is right around the corner,” says Rich. “It may be too late for Ruby, but it may help others who are at-risk.”

Their first event — a four-kilometre walk in 2014 — raised close to $15,000. The previous year’s event was just as successful, and for 2015 they’re also organizing a climb up Gros Morne’s Killdevil Mountain. To boost awareness about HD, Rich launched a Facebook page called Ruby’s Battle.

Mostly, he manages to stay philosophical about the curveballs life has thrown them. But when it comes to his son’s future, Rich has one hope: “I wish that pitcher called life would get a sore arm.”

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Meghan Andrews: Capturing the Trials and Triumphs of HD

Christine and Meghan AndrewsMeghan Andrews’ love of photography started at a young age. Documenting her travels and taking photos of family and friends eventually led her to become a freelance photographer.

Meghan’s father had Huntington disease and passed away in 2004. It was hard for her to watch him grow progressively worse until he could no longer walk, talk or feed himself. After he passed away, she was tested and found out that she also has the HD gene.

At first she was upset about the results, but her friends and family helped her through it and she began to seek ways to turn her results into something positive. She decided she could use her skills as a photographer to document families affected by HD.

“I thought that by documenting families with Huntington’s I could bring awareness to the disease and illustrate how the disease affects not only the patient, but the family as a whole,” says Meghan.

Accompanied by her mother, Meghan travelled across the country to photograph HD families from coast to coast. Her photobook, Huntington Disease: Trials and Triumphs, highlights the strength, courage and positivity of 15 families coping with various stages of HD.

Meghan’s photobook can now be purchased online at http://www.blurb.ca/b/5738114-huntington-disease-trials-and-triumphs or by contacting the Huntington Society of Canada at 1-800-998-7398. The photos will also be featured at an exhibit at Toronto’s Gallery50 November 11-22, 2015.

As a result of this project, Meghan says that her attitude has shifted for the better. She constantly finds herself thinking, “If these people can get through this with a smile on their face, then so can I.”

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Cindy Moore: “Doing Whatever I Can”

Cindy Moore and Erin WadeCindy Moore’s daughter has Huntington disease (HD). Growing up in Brockville, Ontario, Erin Wade used to be an outgoing teenager. She played rugby, enjoyed bowling and hung out with friends. When she was 17, however, Erin was diagnosed with the juvenile form of HD, a fatal genetic neurodegenerative disorder.

Today, at the age of 22, Erin’s speech is slurred. She has seizures and obsessive-compulsive disorder, and Cindy has to watch her closely when she eats to make sure she doesn’t choke.

Cindy is doing everything she can to help her daughter. When Erin needed full-time care, Cindy gave up her job to become her caregiver. But she wanted to do more.

Last fall, inspired by the ALS Ice Bucket Challenge, Cindy launched a Pie in the Face Challenge for HD. Since then, many cream pies have been tossed by family, friends, friends of friends, the mayor, the chief of police, the staff at the local fish and chip shop, Cindy’s former colleagues at Hydro One Perth and many others. And with each new video of cream-smeared faces posted to Facebook, Erin’s smile gets bigger.

Cindy’s fundraising efforts do not end there. Last November she organized a bowling event that raised almost $6,000. In February she organized a chili cook-off and in June, she is hosting an Elvis show. “I plan on doing whatever I can for as long as I can,” she promises.

To date, she has raised well over $10,000 to support highly promising research into HD treatments. She has also created significantly more awareness in Brockville and beyond. “A couple of years ago, nobody knew about this disease,” she says. “Now they know Erin, what she has and how it affects her. And through it all we have made some amazing friends.”

For Cindy — and for Erin — that support means the world.

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Hedley Cullen: “Hopeful for a Cure”

Hedley CullenGrowing up in Moncton, New Brunswick, Hedley Cullen knew that his grandmother was sick. She had a short temper, yelled frequently and seemed to be very clumsy.

Shortly before his first tour with the Canadian Armed Forces, Hedley’s grandmother passed away. That was when he learned of Huntington disease, a fatal genetic neurodegenerative disorder.

As Hedley continued his Navy career, married his wife Kate and raised two step-children, HD raised many questions. With a 50 per cent chance of getting the disease, what did his future hold?

At the time, a Navy regulation allowed for immediate dismissal if he tested positive for HD. So he postponed genetic testing in order to provide for his growing family – he and Kate had two children together.

When the regulation changed in 2005, Hedley was finally able to undergo testing. The results would change his life: he had the HD genetic mutation.

“My world and the world of my family had just been changed,” says Hedley.

Eight years later, after moving to Victoria, B.C., Hedley’s symptoms had progressed and he was no longer able to work for the Armed Forces. He took this setback in stride. His growing involvement with HSC’s Victoria Chapter allowed him to connect with people with shared experiences.

After attending his first HD Retreat, Hedley felt inspired to give back to the HD community in his own way. He emblazoned the tailgate of his truck with “Please Help Find a Cure for Huntington Disease” and an appeal for donations. He also organized a “Tats for a Cure” fundraiser at a local tattoo parlour last summer. The event was a huge success, raising over $2,000 and a lot of awareness.

Why does he do it?

“I am hopeful for a cure so that my children and all other affected people can one day be free of this disease.”

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John Stainsby: Finding Inspiration from Others

John Stainsby 1John and his siblings had never heard of Huntington disease when their mom was diagnosed with the fatal illness. They quickly learned how devastating it is, destroying the brain cells required to walk, speak and swallow. They also learned they each had a 50 per cent risk of heading down that same path.

John wanted more certainty, so he opted for genetic testing. Shortly after his mother’s death, he received the results: he had inherited the HD gene. For the next six months, he walked around in a fog, trying to come to terms with the news.

Despite the hand he has been dealt, John counts himself lucky. For most people, HD appears in their 30s or early 40s. At age 59, he has not yet begun showing symptoms. On top of that, both of his children have tested negative for the gene.

Of course, he still lives with fear – fear of when HD will strike and how he will cope with the steady erosion of his abilities. Of what the future holds for his siblings. Of the emotional and physical stress on his caregivers.

However, he knows the Huntington Society of Canada will be there for all of them, just as the organization (national and local) helped John deal with his mother’s illness and his own genetic test results. “They were just wonderful resources,” he says.

In return, John has given back to HSC. He served as president of his local Chapter and president of the national Board of Directors. He has organized fundraisers and run several half-marathons for HD.

Through HSC, John draws strength from thousands of others across Canada facing the same situation. “There are many people dealing with this disease in their own way,” he says. “It’s inspiring to me. It just keeps you going.”

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Marie-Claude Foisy: Adopting the Huntington’s Cause

Marie-Claude FoisyHuntington disease is not pretty. The fatal illness slowly destroys brain cells, eventually leaving people unable to walk, speak or swallow. And it doesn’t stop there. Because Huntington’s is genetic, if you have HD, your children each face a 50 per cent chance of inheriting the fatal gene.

Marie-Claude Foisy saw the impact on a family she knew and decided she had to do something. So the Chartered Professional Accountant adopted Huntington’s as her personal cause. “For me, giving is my nature,” she explains. “I like to give back for everything I get in life.”

In 2010 she joined the board of the Huntington Society of Quebec (HSQ), serving first as the organization’s treasurer and now as its president. Marie-Claude loves using her business skills to help Quebec families dealing with HD. “We do something and we see the effect instantly,” she says. “It’s really concrete what we bring to people.”

She lists the many ways that HSQ helps: the organization’s social workers run support groups, educate long-term care staff and help families access resources. They offer a summer camp for people with HD, plus a retreat twice a year that gives caregivers a much-needed opportunity to relax and recharge.

One of HSQ’s strategic goals is to establish a facility for people with HD, where staff understand the disease and can provide specialized care. When Marie-Claude first presented this vision to the Huntington’s community, a woman in the audience began shedding silent tears of relief. For Marie-Claude, creating that kind of impact is priceless.

But it doesn’t take a business degree to make a difference. “Anybody can help,” she says. “If you take a little of your time, a little of your money, it goes such a long way.”

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Marion Genoe: Opening the Closet

Marion GenoeMarion Genoe never knew her father. When she was just six months old, he was hospitalized with Huntington disease, a fatal, inherited neurodegenerative illness.

His diagnosis catapulted her mother into a nervous breakdown. Marion and her four siblings were parcelled out to foster care. Eventually, the three youngest returned home, but HD was not something they discussed.

“Back in those days it was all put in the closet,” she says. “But I sure opened it up.” After her mother died, Marion got in touch with the then fledgling Huntington Society of Canada, organized fundraisers, launched a support group and talked to the media.

She also grappled with the fact she had a 50:50 chance of developing the same disease that killed her father. “The minute you drop a cup in the morning, you think ‘oh gosh, I’ve got it,’” she says. At that time, the test for the HD gene had not been developed. All her doctor could suggest was living life to the fullest, so Marion did just that.

Today, at age 68, she volunteers with the local hospital auxiliary, the Day Away senior’s program and the Legion. She line dances, plays cards, knits, crochets and bakes up a storm. Although HD has sidestepped her, she continues speaking about the disease that has killed three of her siblings and is now taking its toll on the next generation.

Amidst the illness and loss, Marion takes solace in how much has changed. Health-care professionals know much more about HD, and care has improved significantly — you don’t see patients in straightjackets anymore, says Marion. Many families speak openly about the disease. And while there is still no cure, potential treatments are now in clinical trials.

“It has really come a long way,” says Marion. And for that, she can take some of the credit.

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