Never Giving Up: The Road from Hope to Cure
Education and Advocacy Dave and Lindey McIntyre lost their toddler Bethany 25 years ago to a horrible disease that leads to paralysis followed by death. A cure is yet to be found. Find out how you can help Dave and Lindey find a cure.
Almost 20 years ago, Dave and Lindey McIntyre lost their young daughter, Bethany, to a rare disease affecting 1 in 7,000 people worldwide called Metachromatic Leukodystrophy (MLD). At that time, nothing could be done to save her life. There were no treatments available and little was known about the condition, which mainly affects children, leaving healthy toddlers paralyzed, often dying during childhood.
The McIntryres refused to accept the status quo. They were determined to ensure that one day a cure would be found. “Our goal is to end the nightmare for the children and families who suffer from the devastation of leukodystrophy,” says Lindey.
Immediately after Bethany’s diagnosis, the McIntyres started Bethanys Hope Foundation, embarking on a journey towards a cure. They personally established the charitable foundation to establish and fund research at a time when there was none. Today, alongside research lead Dr. Tony Rupar, Bethany's parents have established the Bethanys Hope Leukodystrophy Research Lab at Children’s Health Research Institute in London.
With more than $4 million raised to date, major strides have been made. Thanks to world renowned genetic researchers, a DNA gene vector has been discovered that is the key to the treatment. A cure is now within sight. The next step is human clinical trials however, $2 million in public funding is urgently needed to support these vital trials.
Bethany’s parents, dedicated volunteers and researchers never gave up on their hope of discovering a cure. Now, their persistence has brought them close to obtaining one.
Now, they need the help of Canadians to cross the finish line. Visit bethanyscure.ca. Your $20 donation will help bring the cure and make a difference in the lives of children suffering today.