In Barb’s Own Words….
My Ribbons of Hope adventure has begun, with special help from the Huntington Society of Canada. What is my dream? To raise much needed public awareness and support for Huntington Disease (HD) and Juvenile HD (JHD). And so a few weeks ago I thought, well what can I do?
And so finally a few weeks ago, I realized, the Huntington Society already has a beautiful Amaryllis pin, but it’s so tiny, and even when I wear mine, nobody notices it. And so I thought, how can I make it big, bold, and beautiful? Well I thought, I like to sew, I can make ribbons, a blue ribbon for HD, and a purple ribbon for JHD, and I can place the beautiful Amaryllis pin in the centre. Next I contacted the Huntington Society of Canada, and I told them my dream, for the news anchors across Canada to wear Ribbons of Hope during the month of May, to help create public awareness of HD/JHD, and also to highlight some of the wonderful HD events happening all across Canada this month.
Why is this so important to me? When I first got HD, I wasn’t even too sure of what I had, and what was happening to me, but I soon found out, and the stories are tragic. Huntington disease is hereditary. That sounds simple enough, but it isn’t. Some people that are lucky enough to not inherit the gene, get to be the ones to care for and watch several siblings pass from HD. And mostly, I know a young woman who lost her entire family. They did not know HD was in the family until after they had their two young children, and within 10 years, she had lost both her young boys and her husband, to JHD and HD. This is only one story, but the one that has impacted me the most.
HD can be like having a mix of Alzheimer’s, Parkinson’s, and ALS, and it effects each person differently. Some people will have chorea, some will not, and some people will have some form of psychiatric symptoms, but to different degrees. There is a huge stigma with Huntington’s disease. Many are scared of losing their jobs if it is found out it is in their family, because of psychiatric symptoms, decision making skills, etc. Many are scared if they let the secret out, that their children won’t be able to get life insurance. And so, I just want to help take away the feeling of secrecy that so many feel, and create support and understanding.
I am very excited about my campaign. Together with HSC, I am starting small this year. We are sending ribbons out to the news media across Canada, along with a letter I wrote, so that the news anchors can wear ribbons of hope during the month of May, and cover some of the wonderful events happening too. I am also sending ribbons in to my HD clinic at UBC, for all the doctors and the staff, because I am so thankful for all they do. But I am most excited about a ribbon campaign that I will be doing at my own small town shopping centre in Mission BC.
This year, I am starting small, by doing my shopping centre fundraising campaign in my own home town. Why? Because these are the people who may not come to an HD event, but they can be reached this way. And what a simple, wonderful way to reach people, and talk to people about HD. This is a small start, but it will be wonderful to see many people in my own town, not only wearing Ribbons of Hope, but also know a little bit more about HD, that perhaps they didn’t know before.
I hope for someday for people to be wearing Ribbons of Hope all across Canada, to show that people understand and care, and because I know, that when someone is walking down the sidewalk, and they see someone wearing a ribbon, it will cause them to look up and smile, and then they will feel hope.
I’m very thankful to the Huntington Society for all their encouragement and support, and for setting up this special fundraising page. My hope is for enough funds to come in to not only cover this years campaign, but to be able to do an even bigger campaign next year, that would be so wonderful. Thank you to everyone that has helped me with my campaign, and for helping make my dream come true. And a special thank you to all who donate to my fund, thank you so much!
And if you’d like to follow my campaign of Facebook, I’ve created a special page just for that:
Again, thank you so much everyone,
Sincerely, Barb Marshall