Has anyone heard if there is someone interested in heading up a PPMD in Canada? Does anyone know how many families are affected by DMD and BMD in our country? What does everyone think about our own PPMD? Too much of a lofty goal?
I admire your thoughts and desire for this and I believe the stat of 1 in 3600 applies to Canada also. However, my personal feeling is that the PPMD site as is, is fantastic and I love that we have Canadian groups on here. Am I correct in thinking that research done anywhere may benefit us all? Our neurologist in Calgary is quite involved with this group and has even met with Pat. I think having too many groups runs the risk of diluting all of our efforts. But I do think we could do a much better job of implementing things like Coach to Cure MD that NFL teams in the US support. An idea would be to approach NHL hockey coaches to support this, as our boys are often not able to play hockey for long, if at all. One thing is for sure, we need proactive people like you, where ever we are from. Thanks for bringing this up.
I did start a site on Facebook and named it Duchenne Canada last month. We do need something like this since the Muscular Dystrophy society does nothing for us. I was talking to the lady who was in charge of the Southern Chapter here in Manitoba and she was telling me there is no representative for our region out of BC. The majority of the funding is going to Ontario. When one mom was in need of equipment, they told her to move to BC!!! After years of complaints to MD, they finally updated the files in 2009. The most recent before that was 1984!!! Many families meet at clinics and that is only if they have the nerve to ask the other parents in the room what type of MD does their child have. Fantabulous idea Angie!!!!
We fundraise for MDCanada by participating in and volunteering for the MD Walks . Our Neuromuscular Clinic and Intensive Ambulatory Care dept. pediatrician at the Montreal Children's Hospital, Dr. Catherine Henin, expressed interest in starting a group solely dedicated to Duchenne in Canada (this was about 2 years ago). And participating in the exon skipping trial, they know our family is more than willing to help out with research and advocacy (we've been on the local news and in the newspaper). Perhaps contacting her would be a help in getting something going? Feel free to use our names: Andrea Cleary and son Simon Hogue (rhymes with Madonna's "vogue").
Dr. Henin is one busy woman, but you can reach her at 514-412-4420, just ask the receptionist if there is a direct # you can contact her at, or if you can leave a message for her to call you back.
What if we got MDCanada more involved with PPMD? And don't we supposedly have a new neuromuscular "registry" in our country? Could we use that to contact and unite Duchenne families?
I'm a busy girl too, but let me know how I can help.
I know we've been disappointed with our local chapter of MDCanada. We've attended almost every event they've held, but its quite underwhelming.
We spend more time and effort with Jesse's Journey (http://jessesjourney.com/home.asp). We hold an annual walk to raise money for them are are looking at some other activities to do with them this year.
Yes, I remember chatting with you before.
I agree, it would be nice to have a group in Canada where families could talk more. PPMD does a pretty good job, but its not well known. I think you might have been the one that pointed me here from the JJ website. I think the registry that Jesse's Journey setup is more for medical professionals. The idea was to give them a place to look at what previous therapies, drugs, etc had been used and what the results were. Of course with our privacy laws, its unlikely there'd be any way to do an email or get the contact information of anyone on the list.
A Canadian PPMD chapter of some sort would be nice, if for no other reason than to draw more Canadian families to this group so we can communicate more, especially with those that are close to us. I'd love to have an even rough idea of how many families and boys are suffering from BMD/DMD in Canada.