The fund is named for Laura Evans, who began to show symptoms at the age of 13, and eventually died of the rarer ‘juvenile’ form of the disease in October of 2001, at 28 years old.
For ages it’s been common knowledge in the Huntington community that siblings get the disease at about the same age. Science later learned this is because the nature of the defect in the inherited gene determines either a normal ‘adult onset’, or the rarer juvenile version.
When Laura was diagnosed in her early teens, the only silver lining in the cloud was that the family then knew that her sister Andrea, 3 years older, did not have it. In her late teens, Andrea captained a cheerleading squad and won a regional gymnastics championship on the balance beam.
When Andrea made plans to marry in her mid-20’s, she decided to absolutely confirm she did not carry the gene by getting the new genetic test done. It came back positive, meaning that against the odds she carried the lethal gene as well.
Laura’s great hope the last few years of her life was that a treatment would be found before it also claimed her sister. Andrea is now 31 years old, and just starting to show symptoms of the disease.
During most of the 15 years it took Huntington’s to consume Laura, the promise of a cure was on a distant horizon. Her parents, Warren and Arlene, anxiously watched the research, waiting until they were confident that a relatively small amount of money could make a real difference.
Early in 2001 they realized that that time had arrived, and began putting together the Laura’s Hope fund.
The picture on the top right is simply a favourite picture of Laura, taken on a day of family kite flying on the hills of a ski resort.
The castle picture on the left of the screen is an artist’s rendering based on Neuschwanstein Castle in Bavaria. Walt Disney used it as the model for Cinderella’s castle. Emblematic of the magic kingdom, it is a place where dreams come true. Laura visited Neuschwanstein on her last trip before she couldn’t travel anymore. She was enchanted with the castle, and everything it stood for.
The soaring kite connecting the two simply seemed an appropriate symbol of hope for freedom from Huntington’s for her sister and dozens of thousands of others around the world.
