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I had received great hospitality while staying at Lynda and Alan's
for two nights leading up to NMC04.
Kathleen came over to "baby-sit" me while Lynda and Alan were
at work. On Friday afternoon Alan loaded up his van with everything
we required for the weekend. TV, VCR, my wheelchair and luggage......and
three VIP's! We arrived later than the 3pm I had suggested to people
who would also sign in on Friday afternoon. In fact, we got there sometime
after 4pm. And I had to meet my mother and friends to go for a 65th
birthday dinner in the CN Tower at 5.30pm. So I only saw Katie and Pat
Orler as I disappeared up to dump my luggage in my room. When we arrived
back at Novotel North York, several families had gathered in the restaurant
and were putting faces to the names they had seen online for many years.
This was quite amazing for me. Nobody seemed shy. Everyone was relaxed
and so excited to be there. Later, a few (NM)adults and parents moved
to the lounge bar to get aquainted (Well...where else?). Mum and I retired
to our rooms at 11pm. I didnt sleep more than a couple of hours that
night. The whole meeting experience danced around my head. I saw every
hour on the bedside clock until 7am when I planned to rise.
Saturday breakfast was in the foyer beside our conference room. This
was handy for those who came down at 8.55am and took breakfast into
the meeting. HaHa. I was pretty nervous about giving a short speach.
Kathleen is my witness. I did have one written. But I couldn't find
it in my camera bag when the time came. So I had to "wing it".
Pity I can't fly though eh! I stumbled through a few minutes, but don't
ask me what I said! I only remember thanking people for coming and the
organising team. Five years ago I just dreamed of having family gatherings
like Marty's Benign Hypotonia group. In those days I only knew a handful
of contacts spread worldwide. So a "meeting of minds" was
not feasible. And here I was, talking to almost 80 people, 25 of whom
had NM! How apt then, that the name Toronto means "meeting place".
The serious talking was started off by Dr. Carina Wallgren-Pettersson
from Finland who gave an Overview and Medical Care of NM. Carina
was asked many questions during her talk so I think most people were
understanding.
After coffee break it was Dr. Kristen Nowak's turn. Kristen came all
the way from Western Australia to meet us and give her talk on Towards
a Therapy for Nemaline Myopathy: The Various Approaches. Again,
this was well received. Although the detail became more technical.
The buffet lunch was varied. I had chicken dinosaurs and fries! (Were
chickens around millions of years ago?) Lunchbreak also provided an
opportunity for people to ask more personal questions of the Speakers.
Ms. Nicole Dexter, a Genetic Councillor from Boston was next to talk.
Nemaline Myopathy:
What are the risks? What are the tests? was a review of the genetics
of NM. Again, many parents had questions they had been waiting years
to have answered. Ms. Enza Ronaldi talked about Parenting With a
Disability. This subject was not of any use to
me at my age! But many future mothers to be were listening intently.
Lisa Moretto continued the parenting theme by retelling her experiences
with having two young and healthy children with a third on the way!
Niki Shisler followed with explaining the differences and similarities
between raising her two older children and looking after Felix whose
NM means he has special needs. And finally, teacher Kelly Fuerst demonstrated
adaptions and special communication devices she found while trying to
make school life easier for her son Emmett with NM.
The Organising Committee invited Carina, Kristen, Dr. Kim and Nicole
to dinner in the hotel where we had a lovely meal and I was coaxed by
Bob Burgar, into arranging the next NMC in Edinburgh for 2007. In the
heat of the moment I said that would be great. Now that I've had time
to think....I'm not so sure! I will need to find a team of helpers as
good as NMC04 had. Later on, I found myself drawn to the bar again,
where a few "regulars" had gathered.
Sunday morning, and another early rise. This is not normal for me at
the weekends! Two sleepless nights followed by early alarm calls was
beginning to take it's toll on me. This is partly why I came over as
a quiet person. I am a "night owl".
A continental breakfast was available again, but the morning program
was not starting until 09.30. Dr. Carina Wallgren-Pettersson began the
day with Research into Nemaline Myopathy. A presentation about
her own research group and the International Consortium on NM. Many
questions were asked and forms were made available for families considering
donating blood samples via their own doctor.
After coffee break, Dr. Heakyung Kim talked about Non-invasive Mechanical
Ventilation of Neuromuscular Disorders. I felt this subject was
the most important one to many people attending, but I was extremely
disappointed that very few stayed to listen. It may have seemed unimportant
now, but I have heard a surprising number of people suddenly become
seriously ill and forced to use BiPAP or similar machines to assist
breathing part-time or full-time. To understand the reasons for taking
care of your lungs and diaphragm, and do regular tests or exercises
could potentially postpone assisted ventilation. Due to many questions
from those who did not go for "an early lunch", Dr. Kim's
talk was continued in the afternoon. This was followed by an adaptive
yoga class run by Adrienne McRuvie, which was entertaining and included
nearly all the Nemaliners. Me included! The highlight was Daphne's father
holding hands with a little dolly! Awwwwwww.
The day was rounded off by an open discussion with Katie Orler taking
questions about how it is different being a teenager with NM. And also
Mechelle Ross explaining the reasons for her choices and difficulties
as she trained to be an attorney.
A few "stragglers" were staying a further night before the
long trail home. Marty, Gord, Raquel, Kelly, Lenora, Dorothy and I had
a final chat before most went off to bed. Leaving me, Lenora and Marty
to put the world to rights until 1am!
Thank you all for coming!
Sincerely,
David McDougall
NM Convention 2004 Director
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