A trip to the neurologist leads to a tour of the MS research facilities!

I had my last appointment with Dr Kastrukof – all I can say is Dr Carruthers, you have a tough act to follow!

My appointment coincided with a tour of the research facilities for supporters of the MS Society, so Ian and I wer invited to join it.

It was a wonderful day to be there, as it was a week before momentus news from the genetic researchers. We were late as our appointment with Dr K was its usual hour late. We arrived as our group were getting into the elevator. I was my usual self “who are you, then?” I asked. “My name is Carles and I’m going to talk to you about genetics!”

What followed was an amazing talk by Dr Carles Vilarino-Guell, who simplified the incredible advancement that they had made. I wish I had recorded it all, because I certainly can’t remember it. Basically, there are two Canadian families whose genetic material they have had for almost 40 years – so long that they can no longer trace the families. These families are not known to each other, but both have multiple cases of aggressive progressive MS in their families. 

Years go by, the human genome project happens and Carles shows us these machines that can now sequence a person’s genome in 3 days, for $500 and save it on what looks like a camera SD card. 

They did all this investigative work and found a common gene mutation between the two families that is thought to have played a part in their progressive MS.

Why is this important? Well, many researchers think there is no genetic link in MS, and those who believe in it, say it happens in around 5% of families or less (I think). The lady who has led this research for 40 years have always believed and getting grant money has been tough, because of the lack of belief from others. They’ve found a needle in a haystack of needles, in a field of needle haystacks.

What does it means? I dunno… They’re going to give it to a mouse and see if it gets MS – poor mouse. They also know that this gene has been in some other auto-immune diseases – Huntington’s and Parkinson’s, I think – and they will start trying drugs from those diseases that are known to be safe, cutting years off clinical trials. And where one gene has been found, others are surely to come next.

But I could have got it all wrong!!! Here’s the link from UBC that may explain it correctly!

After that we went to the MRI research people and to Dr Traboulsee, the head researcher, but really, we had seen the real deal!

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Catching up on the MS Walk

I’ve been AWOL recently – life has definitely been busy! (Blame the Winnebago…)

First, a catch up on the MS Walk on May 15th. It was a glorious sunny day. Lots of happy smiling faces, lots of meeting up with people that I hadn’t seen for a year! The final funds are still rolling in, but it looks like we raised around $52k, around $5k over budget – all to help people with MS.

Here’s a few photos that tell some of the stories I was involved in on the day.

Kelowna Firefighters gave a donation of $500 – thank you very much! – and encouraged us along the way.

Kelowna firefighters  and board members with a big cheque
The HOGs – the Harley Owners Group were presented with their provincial award for being “Heroes Amongst Us” for all the volunteer work that they do for us, both at the Walk and the Bike Tour

Harley Owners Group with board members receiving their award
I gave a speech and my dogs came too (Ian was there, somewhere, as well!)

Michelle on stage with the microphoneLacey , our dog, looking hotDeefer, our other dog, wearing his red bandana wellIan with our friend and the dogs at waterfront park
The board also ran a raffle and raised over $15oo. The top prize, a bike donated by Fresh Air, was won by local MLA Steve Thomson, who then auctioned the bike for us as well!

Michelle, Ian, Steve Thomson, Jim  Bates  owner of Fresh Air and the bike
From volunteers, staff, board members, friends, family and people with MS, it was a wonderful day and a job well done!