Peaches, DVD and CMT Research

Ah, life happens.

It’s peach season in Niagara and if you have never picked a hot, ripe peach off the tree and immediately sunk your teeth into it

Ripe and juicy

until the juice runs off your elbow, you haven’t lived.

Peach season is long, about six weeks, here. We grow a great many varieties and they are all luscious.

I visited the Nunnamaker farm again and Lori took me to into the orchard to take a look and some pictures.

What a marvelous place an orchard is: the wonderful trees laden who beautifully colored fruit…apples putting on a blush, huge purple plums and sunset gold peaches so luscious and ripe you can hardly believe the bounty that surrounds you.

If I’m not on the farm hanging over my scooter so the peach juice drips on the ground, I’m munching a beautiful peach over the kitchen sink. Yummm!

The corn is tall and ripe, too, so corn on the cob is on the menu almost every other night.

And, the bird-bangers out in the vineyards down the road are beginning to go off at 5:30 a.m. and that means it’s almost grape harvesting time. Hang on. Soon the very air will be full of the rich aroma of grapes and even the seagull and starling poop on our cars will be purple. It’s a lush, bountiful time of year in Niagara and we love it.

***

Last week I filmed a 5-minute DVD I’ve been working on for a couple of

Michael Kirkland and Linda at the Omni Media Studio

months.  It’s the culmination of an Ontario Trillium Foundation grant I’ve been working on since March 2009.

Michael Kirkland, the Toronto architect, agreed to join me and speak about Universal Design and two of his projects that are designed using the concept: Port Place in Port Dalhousie about a mile down the road from us and the new convention centre in Niagara Falls.

The DVD is illustrated with pictures from our AccessibleNiagara.com website and my part and Michael’s was shot with us in front of a green screen which allows the editor to put the visuals in behind us.  The script is directed towards those who run tourism venues to help them see what access really is and why it is important to the entire Niagara tourism sector.

I will be editing it soon and then Niagara Parks is going to help me get it out to those who should see it.  It has been fun doing it and a lot of work but I believe so firmly in how wonderfully accessible this area can be ,and the potential it has, that I had to do it.

***

I subscribe to a CMT online chat list CMT and one of its members, Vicki Pollyea, recently wrote about CMT advances. I know some of you who read this blog have CMT and might not be aware of all of this so I thought I’d add it here.

Vicki writes: I thought it was time to mention all of the exciting positive research news about CMT as well as the newly funded CMT Centers of Excellence being established around the states.

For myself and I think many of you – the thought of a treatment for CMT is difficult to  fathom. But when I think about my young second cousins who have already endured surgeries- I think wouldn’t it be amazing!!!

As a support group leader in my area I have been made aware of the amazing research news coming out of the International  CMT Research Consortium, the NIH and many other research centers around the world.

They actually have discovered about a dozen compounds that decrease the PMP protein levels which is the issue for CMT 1A. Right now they are already working on the next steps. (Work on) CMT2B and X research is also making HUGE strides

What has been accomplished in the past 5 years is amazing.  I am working on a summary of all the research news for the support group and will post it here if that will be encouraging or helpful.

Also the CMT Centers of Excellence are looking at what treatment modalities, therapies and measurement tools are accurate to measure progression ( or remission if these treatments come through).  They are working on the model Dr. Shy uses at Detroit – which was very helpful for me but too far to go back there regularly. There are already running 7 CMT Centers of Excellence.

Finally – after a lot of discussion and thought the CMTA is working on the first national week of CMT Awareness. The first one is  Sept 19-26. They are looking at all sorts of ways to get the word out about CMT. If you consider that the incidence is so high ( ONE IN 2500) – why do more people not know what CMT is?

I think some of it has to do with the funny name thing. For me – it also has to do with being followed at MDA clinics were others are literally dying from their condition. For myself- I always minimized the CMT.. but the truth is it is a very disabling condition/ syndrome and it can significantly impact one’s life.

So my goal for the week of CMT Awareness is to come “out of the closet” with my friends and acquaintances. They all know that there is something wrong with me but many think it is MS. I am going to send out emails and letters telling them the full name, a brief description of the condition and why I am excited about the recent research events….

Vicki in Tampa

Linda here…I’ll bring you Vicki’s summary when it is available.

I’ve been invited to go gliding so watch for fun from 3,000 feet up without an engine!

See you soon.

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