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Children’s Project resumes its walk for cure for A-T

The diagnosis of another relative with the rare genetic disease A-T has strengthened the Van Hierden family’s resolve to find a cure.
Conrad and Rhonda Van Hierden are hosting the annual A-T Walk for a Cure at 11:30 a.m. Saturday, June 23 at Hilltop Dairy.
The family has worked tirelessly in support of the A-T Children’s Project since their son Randy was diagnosed.
The recent diagnosis of Alex Olive, son of niece Crystal and her husband Rob Olive of Claresholm once again brought the deadly disease close to home.
“We feel their pain and as Crystal grew up with Randy she also understands the prognosis of A-T,” Conrad Van Hierden said. “Crystal and Randy were first cousins and spent much of their youth together.”
“We hope to support them in dealing with A-T but also trying to find a cure with their son Alex in mind.”
That support for a cure for Ataxia Telangiectasia continues Saturday during the 2012 Walk for A-T.
Hundreds of people will gather at the Van Hierdens’ dairy for a five-kilometre walk into the countryside.
Since it was founded, the walk has raised more than $800,000 for research into A-T, a rare genetic disease with multiple symptoms similar to cerebral palsy, cystic fibrosis, muscular dystrophy, cancer, and various immune deficiencies that first appears in early childhood.
Most children with A-T are in wheelchairs by the age of 10 and often do not survive into their teens.
Randy Van Hierden, who spearheaded the fund-raising for a cure, was diagnosed at age six and died in 2004.
“The A-T Children’s Project has been making big strides over the past year, co-ordinating and funding important projects,” Van Hierden said.
The type of work the A-T Children’s Project supports includes:

  • At the A-T Clinical Centre at Johns Hopkins Hospital — experts in neurology, immunology, swallowing, and pulmonology — continue to evaluate children with A-T and publish peer-reviewed papers used by clinicians around the world.
  • A lung specialist at Johns Hopkins is starting a clinical study to see if children with A-T have increased markers of inflammation, and if so, if treatment with a certain anti-inflammatory antibiotic improves their lung function.
  • A new, specialized scan of the brains of people with A-T is giving doctors information about the way the brain functions. This kind of information can give researchers clues for possible treatments.
  • Doctors are investigating the neuro-circuitry in people with A-T, or how the brain is wired. The A-T Children’s Project is leading an effort to see if there are possible treatments such as deep brain stimulation that could positively impact how A-T people can move.
  • A researcher is taking a look at a new possible reason as to why brain cells die in people with A-T. If her hypothesis is right, then the results will open new avenues for possible treatments.
  • Scientists all over the world are investigating drugs that could possibly slow down the brain cell death in people with A-T, using methods that include drug screening and also testing particular compounds.

Registration for the 2012 A-T Walk for a Cure begins at 10:30 a.m. Saturday, with the walk getting under way at 11 a.m., rain or shine.
People collect pledges in advance to raise money for the A-T Children’s Project or make cash donations when they register.
Lunch will be served at Hilltop Dairy during the post-walk part, which includes activities for children such as the astro jump, games, petting zoo and horse rides.
A silent action also takes place following the walk to boost fund-raising.
Donations may also be made directly to A-T Children’s Project Canada, Box 1958, Fort Macleod, T0L 0Z0. It’s a registered charity, so tax deductible receipts will be issued.
For more information call Conrad Van Hierden at 403-634-2625 or by e-mail at conradvh@telus.net.

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