Hay River residents join fight against Chiari

 

Tammy Powder and her five-year-old daughter Ella Marie both participated in the “Walk Across America” event in Tacoma, WA., on Sept. 22.
— Myles Dolphin/NNSL photo

Canadian Chicks Kickin’ Chiari – a group organized in Hay River – made history by becoming the first Canadian team to participate in Walk Across America on Sept. 22. The fundraising and awareness event, organized by Conquer Chiari (pronounced kee-ar-ee), was held at 47 different locations in the United States last year and raised over $405,000 to fund research projects to fight the obscure disease.

Hay Riverite Tammy Powder was diagnosed with Chiari in 2009. Earlier this year, she found out her five-year-old daughter Ella Marie also has the disease.

Chiari is a rare, neurological disorder with a wide-ranging set of symptoms – from severe headaches to extreme pain in the neck and shoulders – that affects everyone differently.

Brain surgery is the only treatment that is currently available to help abate the symptoms.

On Sept. 20, Powder and her daughter embarked on a long-awaited journey to Tacoma, Wash., along with six close friends and supporters: Donna Lee Jungkind, Arlene Mills, Angelia King, Sharmayne Horton, Jamie Harris and Lisa Schumann.

Their goal was to meet other Chiarians and raise much-needed awareness and funding.

Powder had wanted to attend the walk for some time, and, as soon as her daughter was diagnosed, she knew it was the right moment to go.

It gave it more meaning,” she said. “I became a member of an online support group for parents of little Chiarians, kids who suffer because this disease is so rare and misunderstood. It wasn’t until then that I really knew I wanted to do something instead of just pray. I asked my closest friends to come with me, and the girls have rallied in a phenomenal way.”

When fundraising for the walk began, Tammy was hoping to collect $3,000 for research – and praying for $5,000.

As of Sept. 19, her team had raised an impressive $22,000, all of which goes directly to Conquer Chiari. 

All we’ve done is spread the word online,” Powder said. “We asked if people were willing to sponsor us. The other girls e-mailed their contacts and the word spread very quickly. The support in Hay River has been amazing. Generous people I don’t even know, who work with friends, have contributed large amounts of money. As soon as people hear that a little girl has been diagnosed, it puts a face to this disease that they’ve never heard of before.”

The executive director and secretary of Conquer Chiari, Rick Labuda – a Chiarian himself – e-mailed Powder to support her and her team.

Hay River businesses have also donated and one supplied the team with matching T-shirts, sporting “For Ella” on the front and “Canadian Chicks Kickin’ Chiari” on the back.

Sharmayne Horton joined the team because she felt it was important to support her friend.

She told us that she was going a few months ago and asked if we wanted to join her, and, of course, we want to show our support for her,” Horton said. “In just a few months, our friends and families, as well as local businesses, have helped us raise a lot of money. It’s truly heartwarming.”

— Myles Dolphin