Fort Macleod residents can find out more Friday, March 2 about a rare disease that has links to their own DNA.
The A-T Children’s Project will host a Rare Disease Day event from 5-8 p.m. at Trinity United Church in Fort Macleod.
A buffet dinner, silent auction and presentation on A-T, or ataxia-telangiectasia, is planned.
“Everybody in the community is invited if they want to learn about A-T,” said Conrad Van Hierden of the A-T Children’s Project.
A-T is a rare genetic disease that has the combined symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune system deficiencies and a high rate of cancer, particularly leukemia and lymphoma.
The disease targets young people, such as Van Hierden’s son Randy who was diagnosed at the age of six and died from the disease in 2004.
Conrad and Rhonda Van Hierden and their family have been tireless supporters of the A-T Children’s Project, and the A-T Walk they organize in June has over 13 years raised more than $800,000 for research.
The Van Hierdens recently learned their niece Crystal’s son Alex has been diagnosed with A-T.
That prompted the Van Hierdens to organize Friday’s event to further raise awareness on behalf of Crystal and Rob Olive and their family.
“For Crystal and her friends, they don‘t know a lot about it,” Conrad Van Hierden said Friday. “For a young family to have this put right in front of them, they want everybody to live, breathe, eat and sleep this with them.”
When Randy was diagnosed, the Van Hierdens held a similar information session.
“We had great support that evening,” Van Hierden said. “It’s what gave us the energy to fund-raise.”
That support continues today, and was vital in helping the Van Hierdens cope with losing Randy, and continue to raise money for research.
“If you don’t have support, you couldn’t get through it,” Van Hierden said.
One in 30,000 people have the genetic defect that causes A-T.
Everyone has two ATM genes.
“They play an important role in everybody’s DNA,” Van Hierden said.
A-T is directly linked to more than 200 immune deficiencies.
Van Hierden will tk Friday about ongoing research, including two clinical tries under way with young people.
The information presented at Friday’s event will be of interest to a wide range of people.
“If anybody else has a rare disease and wants to learn how to create awareness,” Van Hierden said. “They can get involved with us and learn how to bring awareness to something that is not very common.”
The 14th annual A-T Walk is planned for Saturday, June 23 at Hilltop Dairy north of Fort Macleod on Highway 811.
In other A-T news, 24 people from the area recently took part with the A-T Children’s Project in half and full marathons at Disneyland.
There were 350 runners representing the A-T Cildren’s Project, including 14 children with the disease who completed five kilometres.
Donations are being accepted for the bake sale and silent auction on Frday that will accompany the A-T information event at Trinity United Church.
Anyone interested in contributing can contact Conrad Van Hierden at 403-634-2625.