Huntington's disease is a fatal neurodegenerative disorder. It progressively destroys both mind and body, eventually taking away the ability to speak, walk, and even eat without help. Huntington disease is also a disease of families. Every child of a person with HD has a 50 % risk of inheriting the disease. One in every 1,000 Canadians are touched by HD, whether they have the disease themselves, look after someone who does, or have a friend or relative with HD. Currently there is no cure for Huntington's. However, with recent research discoveries we've never had more reason for optimism. It's been a very exciting year!
You may or may not be aware that my dad was diagnosed with Huntington's about 15 years ago and is now in the final stages of the disease. Although only 59, he has been living in nursing homes for the past several years. He is confined to a wheelchair, has not been able to feed himself for more than three years now, and his voice and all he has to say is locked up, unable to get through his uncontrollable mouth and throat muscles. This, of course, means that myself and my siblings are all at risk of inheriting the disease. There are also a few other families in the Redeemer / Hamilton community who have had Huntington's diagnosed in their family, as well.
Every year in the fall, the Huntington Society of Canada sells beautiful "Orange Sovereign" amaryllis bulbs in kits for $12/each that include soil, a pot, and the bulb, to help raise money for research into cures for this disease and others that share similar neurological roots (Parkinson's, Alzheimer's, etc.) Last year, this community helped me raise over $1,400 for the Huntington Society of Canada in only a few short weeks. I would love to beat that this year.
The kits, once purchased, can be stored in a cool, dry place until planted and tend to bloom 6-8 weeks after planting. The flowers are a beautiful bright orange, and they really do make great gifts.
If you purchased a bulb last year and enjoyed it, I would encourage you to buy an extra this year to share with a friend. I have placed a large order this year (based on the overwhelming response of last year) which is scheduled to arrive on November 6th - enough time to plant and have blooms by Christmas and not too far away from Christmas to store the bulb in a cool place until given at Christmas as a gift.
Please consider supporting the Huntington Society by ordering one or more of the kits as gifts or flowers to liven up your office space! Words cannot express how much each vote of support means to those of us affected. If buying flowers is not your "thing", we would really appreciate your prayers for those affected as well as for the scientists who are busy researching a cure.
For more information on Huntington's Disease or the Huntington Society of Canada, please visit www.huntingtonsociety.ca
Why the Amaryllis?
The amaryllis is the signature plant of the Huntington Society of Canada. It represents the vitality of our organization, and the hope that we will soon find a cure. With your help, we will win the fight against Huntington disease. The Orange Souvereign is a top quality premium grade 26-28 centimetre bulb. Its tall, green stalks are topped by an exotic burst of orange blooms. These bulbs are specially imported from Holland in limited quantities.
A young man with Huntington's Disease recently posted the following on an HD Facebook support group:
I find myself understanding what my father meant about the silent scream.
It feels like no matter how hard you try no one understands what this world is like.
Your body is changing, your mind is slower, your balance is off, and your emotions are wild.
You're not in control of yourself anymore.
No one hears you.
No one understands you.
People dissociate with you.
People are afraid to learn more.
You are stuck and you're screaming "God, help me!"
Can anyone hear me?
Now that you know a little, know more.