Nemaline Myopathy Support Group

NM Conventions

1st NM Convention 2004

Directors Report of 1st Nemaline Myopathy Convention, 2004

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

The NMC04 Organising Committee:

Director - David McDougall (Scotland)
Toronto Committee - Daphne Goring and Bob Burgar, Kathleen and Lynda Roy, and Alan McCartney

History of NMC.

While surfing to research for the NM website, I came across Marty White's web for Benign Congenital Hyopotonia. He had organised a weekend meeting for families dealing with BCH. This gave me the idea of a Family Gathering for people with nemaline myopathy. So in 2001 the first NM Family Gathering was held in Florida, where four families met at the villa I had rented. This was a great success. Although I knew it would be a while before there were enough contacts for a proper weekend, I dreamed of having a much bigger event one day. And since I had become friends with the leading scientist for NM, I hoped we could have a few research talks explaining what nemaline myopathy is and how the research is developing. In 2002 the idea was rekindled by Zania Ballentine. By now my contact database showed that the Ontario/New York area had the largest cluster of people with NM. Therefore I chose Toronto to hold the 1st NMC. As a coincidence, Toronto means "meeting place"! October was also chosen because two NM researchers would be attending another conference in town the previous weekend. Zania started organising the meeting, but soon had to give up due to personal career developments. So with nothing to start me off with and no previous experience, I called upon four friends in Toronto to help. And the rest as they say is history!

Messages of thanks from the NM egroup members

How awe inspiring it all was.... Hynda said as we were taking the big picture of all the NMers...Dakota was right next to Christian and Christian's beeper went off and Hynda saw Dakota reach over and hold Christian's hand. It brings tears to my eyes every time I tell the story.
I don't know if anyone saw it because we were all taking pictures.How touching.

I'll never forget the loving thankful look on Kathleen's face when she said...."I found my long lost twin when I met Michelle". How inspiring her story was.

When Melissa said how inspired, grateful and moved she was and we all were when Niki spoke.

Seeing the pack of tween/teen girls together. Laughing, sharing, swimming, hanging out in the sauna, watching a movie, doing the yoga, eating pizza, putting on make-up, telling their stories. The group of guys hanging out together, sharing their stories.

All the speakers...the hope...the light...but most of all I'll never forget all the faces and all of you. I'm so honored to have met you all and you can't imagine how profound it was for Hynda to meet you all....There's so much more to say...little by little it'll all come out. Thanks to all.

How very special it was to meet you David, and your mum. You are so humble in accepting our gratitude for starting all this. Your face is so beautiful and clear and was beaming the whole time. Thank you, thank you.

Lea Blum

Thanks to EVERYONE who attended and helped put together such a great, informative conference in Toronto. Thank YOU David for putting the 1st ever website about NM that actually anyone can understand and be a part of that is NOT a specialist, with just a ton of medical "jargon!" It was SO great to FINALLY meet, get to know, become friends with other people that suffer from this horrible disease. I've felt nothing but ALONE ever since I was diagnosed over 14 & a half years ago......I am NOT ALONE!!!! THANK YOU ALL!
I wish I could have spent time with more of you for a lot longer. Next year, lets have it for another day, and MORE events! I learned SO much and am SO happy I went. God Bless you David ("The Wizard") for creating such an amazing, informative website that WE ALL can be a part of. God bless you ALL!

Thank you to ALL!

Mike Taylor

Finally, a chance to sit at the computer. We're sorry we had to leave after lunch and miss the yoga and Katie's speech, but both Bob and I had to work on Monday, only to return to Toronto on Tuesday for an appointment. Like everyone, we can't say enough about the experience that we had. Nicole went to school Monday and gave a speech about her illness, the conference, and about all the wonderful new friends she now has. She had the time of her life. (maybe we'll include the pictures of her sleeping on the way home in the car :) ). The speakers were incredible, and so are all the parents. I have to commend Christian's, Marie's, Dakota's and Felix's parents. You are AMAZING. With all you deal with on a daily basis, you are still happy go lucky people with a positive outlook on life, which is noticeable in the quality of life we see in your children. A picture may say a thousand words, but the real thing says a million. In the eyes and mannerisms of these kids, you see intelligence, beauty and grace.

I would like to thank David, Daphne, Lynda, Kathleen and Monette. The conference was a wholehearted success!!!!!!

Cyndie Vachon

Thanks David and everybody who organized! It was awesome!
I had a really good time. Met so many people that touched me in one way or another. I'm at work right now, but hopefully we can all get some discussions going and pictures circulating soon.
I am feeling kinda warm, kinda fuzzy inside ~ I'll admit it. hehe

Greg Labine (aka Spokes)

Hi everyone,
I am so happy that Fawkes and I went to the conference.
I feel so much more secure in fighting for what Fawkes needs. Everyone was so kind and warm. Fawkes took a real shine to Katie. What an amazing girl. Also meeting Isabelle, Emmett, Christian, Dakota, Marie, all you amazing children and parents give me renewed faith and strength. Niki 's speech was so touching and made me rethink my opinions on what is best for Fawkes. Dave again you are a true light in a dark tunnel. Fawkes has not been feeling well since we came home, he is weak but I think that he might have just had so much fun and being able to play with children just wore him out. I miss you all. Christian and Monette, I am so happy that he pulled through. Once again that boy has the heart of a lion.

Sherry and Lil Fawkes

I want to reinterate everyone elses words...WE HAD GREAT, FANTASTIC, FOREVER REMEMBERED TIME!!! I am sorry that Marie did not have the dark black hair and brown eyes that everyone expected...light brown hair and hazel eyes. I'll work on getting better pictures on the web. My sons also had a great time Raymond made some new friends and wants to invite them all over for a sleep over on his next birthday! Mitchell learned a bit more about the sister he is just really getting to know. I think he also thought a few of those girls were "cute".

Dave...I never realized you were as quite as you were...No speeches!?!

The Teens...You inspire me.

Amy Rhodes

Raquel and Gord,
It was a pleasure to meet you both. I enjoyed getting to know you that little bit. It really was a magical experience. I'm so glad that we participated.

Kelly Fuerst

David,
Just wanted to drop a note and tell you how great it was to meet you!!! I was really glad that we attended the conference. Hope you had a good trip home!
Have a great day!

Lisa Moretto

I want to write so much about the convention. It was such a rich and rewarding experience for me and yet for the first time on the group I am speechless/typeless whatever you want to call it!!;-)

Lynda Roy

I couldn't agree more. NMC2004 was a huge success!!!
Dave, I know I told you in person but I just want to say yet again what a monumental contribution you have made to the NM community. You are what brought us all together to love and support one another and I can't thank you enough for that.

Like you, I didn't get an opportunity to speak with everyone I wanted to. There simply was not enough time to touch base with everyone. But I am so very grateful for having had the opportunity to go and meet all of the family. It was definitely an experience I will never forget and has made a significant impact on my life and Christian's.

I agree that the kids had an awesome time. Christian will be smiling for months from the experience. I know how great it must have been for him to finally meet other kids just like him who could relate to the same issues he's had to face. And what a great bunch of kids!!! I'm already looking forward with great anticipation to NMC???

Monette Smith

Hi Everyone,
I just wanted to express how wonderful and incredible it was to meet all of you who attended the NMC04. I told a couple of friends who asked about it that it was a 'life altering experience' and it truly was. People came up to me to say hello before I had my name tag on and I realized "oh yeah, they've seen my picture on Dave's web site!". Meeting others with NM was truly amazing! I felt like I found another sister in Mechelle, we look so much alike and have many of the same mannerisms. I loved seeing the children. And hearing of Dakota bringing Christian gifts truly touched me. At one point I walked by the kids room to see the girls all doing crafts together and the boys playing on the floor and it was so sweet.

I was also very impressed with the speakers. They were so warm and friendly. I was very impressed that they all stayed to listen to each others talks.

I will post some pictures soon!

Kathleen Roy

Oh I agree! It seemed on the first night we just ran into someone everywhere we went close by the hotel Friday night. It was exciting to meet friends and get to know them even better over the weekend. It was hard to talk to everyone, but we did try.

Katie was a hit with the small children in the conference room, it seems. She played with Isabelle and Fawkes.

The speakers were wonderfully informative and nice people to have around.

Pat Orler

I must tell you all, after seeing your pictures of the convention, I am a bit weepy. I am looking at the pictures and thinking how proud I am of all of you. And how great our kids look and how much I wish that I was there. Needless to say, I hope to make the next one with Peri.

Lori Finkelstein, mama to peri, age 4

Dear David,

I am happy that people there really showed how much they have appreciated your valuable work.

I can see how this was extremely important especially for all those who had never before met a fellow “Nemaliner”. For me too, this was an immensely valuable experience.

Edinburgh certainly sounds like an excellent idea, I wish you inspiration and good luck with all the arrangements.

All my best,

Dr. Carina Wallgren-Pettersson

Photo gallery

  • 01Friday night in the bar. John Perry, David McDougall, Lenora Nuspel, Dorothy McDougall, Greg Labine, Mike Taylor, David Taylor, Howard & Lea Blum
  • 02Beginning the convention with a short speach from David.
  • 03Marty White and Gordon Bagshaw
  • 04Mike Taylor and Greg Labine. Thanks David and everybody who organized! It was awesome! I had a reeeally good time. Met sooo many people that touched me in one way or another. I'm at work right now, but hopefully we can all get some discussions going and pictures circulating soon. I am feeling kinda warm, kinda fuzzy inside ~ I'll admit it. heh Greg (aka Spokes)
  • 05Marty, Dave, Lenora and Dorothy
  • 06Nicole, Emily, Sonya, and Hynda
  • 07Monette, Christian and Monica.
  • 08Christian Smith and Dakota Williams
  • 09David being presented with a plaque
  • 10Nicole Dexter, Dr. Kristen Nowak and Dr. Carina Wallgren-Pettersson
  • 11Emily, Hynda, Taryn, Sonya and Yoga teacher Adrienne McRuvie
  • 12Mechelle Ross, Lynda Roy, Kathleen Roy, Dr. Kristen Nowak and Dr. Carina Wallgren-Pettersson
  • 13Back row: Kathleen & Lynda Roy, Gordon Bagshaw, Sonya and Conner, Emily, Hynda, Jessica Belasco, Della Allen, Lisa Moretto & Julie Perry, Mechelle Ross and Marty White Front row: Marie Rhodes, Greg Labine, David McDougall, Mike Taylor, Cindy, Emmett Fuerst, Katie Orler, Fawkes Rediker, Christian Smith and Dakota Williams
  • 14Friday night in the bar. Julie Perry, David McDougall, Greg Labine and Marty White
  • 15Hynda handing over a collection of US$2883 to the NM Foundation.
  • 16Julie Perry, Lisa Moretto and Kim Hartzburg
  • 17Dr. Kristen Nowak, Jessica Belasco and Dr. Carina Wallgren-Pettersson
  • 18Franca, Fawkes and his mom Sherry Rediker
  • 19Isabelle and Fawkes. Our youngest conference attendees!
  • 20Dave receiving his plaque
  • 21
  • 22David and Mike Taylor
  • 23Niki Shisler
  • 24Lisa Moretto
  • 25Lynda Roy with Nicole Dexter
  • 26Enza Ronaldi
  • 27Sonya, Conner, Hynda, Taryn and Emily Nicole(sitting)
  • jquery slider free downloadNM Foundation Board members finally meeting for the first time. Lenora Nuspel, David McDougall, Monica McMullin, Mechelle Ross and Monette Smith
  • 29Group photo of (almost) everyone who attended NMC04
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