Former RCN Steward leads Huntington Walk

PO1 (ret’d) Hedley Cullen encourages people to participate in the Walk for Huntington’s disease awareness and fundraising.

Peter Mallett, Staff Writer — When Petty Officer First Class (PO1) (ret’d) Hedley Cullen received his devastating Huntington’s disease (HD) diagnosis at the Base Hospital in 2013, his Steward career with the Royal Canadian Navy (RCN) was cut short.

Now, the 53-year-old father of four is leading a fight for awareness and funding for the genetic brain disorder.

On May 27 at 10 a.m. at Captain Jacobson Park in Esquimalt, Cullen and the Huntington Society of Canada, Vancouver Island and Gulf Islands Chapter are holding a walk to raise funds and awareness for HD. They hope to attract support from Esquimalt’s military community.

“I am doing this to help raise funds for research and a possible cure but also to support all the children out there and the next generation of people that will someday need to come to terms with an HD diagnosis,” he said.

“The military has such good connections with the community, and I am certain people out there will learn more about HD and want to support us and help us fundraise or spread awareness,” he said.

Cullen served 25 years in the Royal Canadian Navy on both coasts.

“My chief came to the waiting room at the hospital and said, ‘If you get better, we will promote you’,” remembers Cullen. “I told him, ‘Post me to the Joint Personnel Support Unit (JPSU) because my career is coming to an end’.”

A decade has passed since his diagnosis.

These days, Cullen uses a cane to get around. Some of his symptoms include loss of memory, uncontrollable shaking, and involuntary dance-like movements. His symptoms make many of the simplest tasks, such as cleaning his home, impossible. He takes five medications three times daily to combat the symptoms.

Although his quality of life is dramatically reduced, Cullen says he isn’t giving up his resolve to stay healthy or to fight HD. In March, Cullen became President of the Huntington Society of Canada, Vancouver Island and Gulf Islands Chapter.

Josh Croisetiere, a former RCMP officer and Royal Canadian Air Force Electrical System Technician who served six years with the 450 Tactical Helicopter Squadron in Edmonton from 1973 to 1979, said Cullen’s positive attitude despite everything going on in his life inspired Croisetiere.

“Once you meet someone like Hedley in person, you realize how serious this disease is and feel compelled to help,” said Croisetiere.

Now, he is working hard to drum up sponsorship for the walk. He and his wife, Susan Nickerson, now Volunteer Event Coordinator for the local chapter, initially connected with Cullen on a Facebook Page. Once educating themselves about the disease and Cullen’s plight, they decided to join the fight.

“The local chapter hasn’t had a HD walk since 2016; Hedley felt compelled to get involved and raise awareness and funds for research for a cure,” Nickerson said.

Cullen encourages those who can’t take part to consider participating in the virtual walk to help raise funds.

An Ontario philanthropist has agreed to dollar-match all funds raised when this year’s fundraising campaign wraps up on June 30. Funds raised will go to research and support services for Huntington’s disease. To register and for more information on the virtual or in-person walks, visithuntingtonsociety.ca/ or on the Huntington Society Facebook Page.

As May is Huntington’s Disease Awareness Month, the Township of Esquimalt will participate in the global ‘Light it Up 4 HD’ campaign, which sees municipal buildings light up in blue for HD and purple for juvenile Huntington’s disease. This year will also mark the return of an in-person walk in Victoria. 

Huntington’s disease

HD is a rare disease that affects approximately 1 in 7,000 people. With its complex array of physical, mental, and emotional symptoms, HD is characterized by the progressive loss of memory, uncontrolled movements, psychiatric disturbances, and cognitive decline. There is currently no known cure or treatment to stop its progression. Each child of a parent with HD has a 50 per cent chance of inheriting a gene mutation that leads to the progression of HD.

Every person living with HD will experience symptoms and progress differently. Signs and symptoms usually appear between the ages of 35 to 55.

Physical symptoms: involuntary dance-like movements (called chorea); diminished coordination; difficulty walking, talking, and swallowing; weight loss.

Cognitive symptoms: difficulty with focus, planning, recall of information and making decisions; impaired insight.

Psychiatric symptoms: depression, apathy, irritability, anxiety, and obsessive behaviour.

Source: Huntington Society of Canada

PO1 Hedley Cullen during his service years with the Royal Canadian Navy.