Posts Tagged ‘World Congress’

I am in the early stages of Huntington’s Disease, and I have decided to do an annual raffle quilt for HD research.  This was my first raffle quilt, and soon, I will be starting on next year’s quilt. If you would like to know more about HD, please visit http://www.hdac.org

The Rose 2009 annual raffle quilt, for HD research

The Rose 2009 first annual raffle quilt, for HD research

Make  Me a Quilt…and make it Big!

Make me a quilt, my friend Eric said to me … but … make me a quilt … but … make me a quilt … It had been a very sad week on the forum, and I was sad. So my friend Eric said to me, make me a quilt … but I was sad … a quilt???  Yes, make me a quilt. Uhmm, you want a quilt? Yes, make me a quilt … how big? … big! … like single size? … bigger … like double size? … no, real big! … like uhmm, queen size??? Yes, make me a quilt and make it big!

So I started making a quilt, and forgot about what I was sad about.  But along the way, I got another idea. I decided I wanted to make a nice quilted wall-hanging, as a gift for my HD clinic, and Eric said,  very good. And then I said, I think I will also make a raffle quilt, and it can be raffled for HD research, and Eric said, very good. And so, did I dare, once again, to ask, how big? I said, how about a wall-hanging raffle quilt, and he said, oh no, make it big! Ok, single size? Oh no, make it big! Double size??? Oh no, make it bigger! uhmm, gulp, queen size??? Yes! That’s it, make it big!!!

And so, a small idea, of making a quilt, turned really big! 🙂

And so, my quilt went to: The World Congress!!!

Me and Dan at the World Congress!

Me and Dan at the World Congress!



Carly, from the HD clinic, who helped me so much with my raffle sales, thank you Carly!
















So I made the wall-hanging quilt, and gave it to my HD clinic. And I told them about the raffle quilt. I said, hmmm, the World HD Convention is coming to Vancouver soon, maybe the quilt could be draw there? And they said good idea! And so, I thought my quilt would be at the convention, and the ticket would be drawn, and that would be wonderful. But, I didnt think that I would be there too! And that I would be able to meet my online friends from all over the world! And that I would stand on stage, and that Dr. Hayden and Dr. Leavitt would give me flowers. And that I would be able to speak to the congress, about why I made this quilt. And, that someone very famous would win my quilt.

The Winner is!!! …

The Winner is!!! Drum roll please! NBC news reporter, Charles Sabine!!!!!!!

The conference was awesome! I was so happy to meet Michelle! and Matt! and Jimmy! and Will! and Sherri! she is new to the forum. So wonderful meeting everyone!!!!!!! And i met so many people i didnt know, from all over the world.

Before the conference, my raffle quilt total was at $920.00

And at the end of the conference, the Grand Total was!

Grand Total: $1400.00 

I am so happy and thankful, everyone that contributed to make this nice for me. And during the closing ceremony, I went up front to pick the winning ticket. I spoke for a moment in front of the whole congress, and I told everyone, that the reason I did this, is because I feel so fortunate, to be able to go to one of the best HD clinics in the world, and that because of the good care I am receiving there, that my HD is doing good. And that that was why I wanted to do this, because I’m just thankful that I am able to do this.

And then we picked the winning ticket, and it was for Charles Sabine, the famous NBC news reporter. He had spoken to me just an hour before the draw, came to my table, and admired the quilt, and asked me a little about myself, and why I did this. He bought the very last 4 tickets before the draw. And I am serious, we shook that ticket bag up really really good! That is why, I was kind of blown away, when it was him that won. I would have loved whoever won, but this hit me so strange, that I gasped when his name was called. So he came up and got his quilt, and hugged me, and then Dr Hayden and Dr Leavitt gave me a huge, beautiful bouquet of flowers. I was so blown away, I hugged them both too.

One of the most striking moments for me though, was earlier in the day, when a lady with HD came over to my raffle table, and she was crying, and she hugged me and hugged me and hugged me, and cried and cried. She told me that she read my story, about the quilt, and she said, your story gives me so much hope .. .that is truly what this was meant for, and so that really meant a lot.

Friends Meeting Friends

My friends, Matt from the UK, me, Will from North Carolina, and Michelle from Australia

My friends, Matt from the UK, me, Will from North Carolina, and Michelle from Australia
















And now, for the more personal side of it. I loved meeting my online friends soooooooooooooo much! That meant the world to me. That was the best part of the conference, meeting friends. It was so wonderful meeting Sherri, she is such a nice person. Michelle is so lovely, we cried and hugged when we met, and her cousin Naomi was there, So nice to meet her too. And Willie our marathon man! lol We hugged and hugged, so nice to meet him, and Matt, our junior marathon man! 

Jimmy and the gang

Jimmy and the gang













Got a photo of me and Will and Matt, and Jimmy and Michelle. Yes, Jimmy Pollard was there. Jimmy made things sooooo nice for me. When I was feeling a bit nervous and tired near the end of the first day, he visited me at my table, and introduced so many people walking by to me. Jimmy is so easy-going, real nice person to talk with, and made my day nice. And the next day, my husband and daughter both came, and that was so nice. Dan really enjoyed talking with Jimmy, and Matt came and brought his lunch to our raffle table, and sat and had lunch with us.

I only stepped in and out of a few speeches, for a few mins at a time, I wasn’t really able to focus on that very well, and that’s ok. Charles Sabine, at the end of the day, did an awesome, and oh so funny, wrap up of the days events, and summarized the research speeches into something understandable! That part was sooooo funny, and he had everyone laughing so hard. I was so happy to meet everyone, and to meet new people too.

The Meeting Place

The best part of all was meeting people, my table seemed to be the HDAC meeting place, it was perfect. In between sessions, anyone that wanted to meet anyone from HDAC just seemed to come to my table lol. And Matt came and had lunch at our raffle table one day, that was so nice. And Jimmy came to my table and introduced me to so many people. Next thing you know Matt, Jimmy, Michelle and Will were all at my table at one time, so we got pictures! And i met Robi, and Shana Martin. And Bonos and his wife came by my table.


Dr Hayden at my raffle table

Dr Hayden at my raffle table















Oh, and one time when Dr Hayden was walking by, I snagged him , and got a picture of him behind my table with me, this was very cool. Oh, and uhmmm, lol, all I can say for my husband is this, he liked the food more than anything!  Oh, and the best part of the conference, was the rock’n roll video of Dr Hayden and Dr Leavitt! Theyre wearing tank tops, and playing guitars, and singing rock and roll!!! LOL LOL Then they were kissing cheek to cheek!!!!!!!!!!! LOL LOL Was sooooooooo funny!!!!!!! Don’t expect that out of staunchy looking researchers!!!! LOL

Make me a Quilt!

And so, those four words, make me a quilt, turned into something really big. My friend Eric is still waiting for his quilt. Eric is once again saying, where is my quilt, make me a quilt! But first, I need to get started on Next Year’s raffle quilt. Do I dare ask Eric, how big????? Nooooooo. This turned out much bigger than I ever could have planned. And my husband now says, I think you better make Eric a quilt!!!

Thank you to everyone for your encouragement and support, and for making this such a wonderful experience for me, and thank you so much to Carly, for helping me so much with my raffle, thank you so much! 🙂


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Reach for the Summit

Reach for the Summit is a cross-Canada one day conference about Huntington’s Disease. Each province has a meeting place, and each place is video linked all across Canada at the same time. I’m in the early stages of HD, and have never been to any kind of a conference, and so i was quite hesitant at first about going, but then decided i really wanted to go, and i’m so glad i did. We live 2 1/2 hours from Vancouver, and getting there could have been difficult for us, but thank you to the Staying Strong Foundation, we did go, and i’m so glad that we went.

Our Hotel Adventure

Ok, soooo, do you guys want alllll the details? lol Ok sure  🙂   So we left here just before dinner, and traffic was good. We had phoned ahead and found out the hotel wanted $16.00 for parking, so we’re like no way lol. So we drove to St Pauls Hospital, where the summit was going to be, and we parked there. Their  parking is only $14.00 for 24 hours. So we’re smart, we parked there, grabbed our bags, and walked to hotel, only two blocks. Perfect.

Ok, me and Dan just don’t do hotels, we never have, so we got up to the room and i thought it was gorgeous! Bed linen was so beautiful i didnt want to touch it. So then, there’s a little counter, with a little coffee maker and a packet of coffee, enough for us each to have a cup of coffee in the morning, very nice 🙂 Then we see this bottle of water, lol, and it says, if you drink this you will have to pay! LOL LOL Ok, am i sposed to be talking bout the summit? 🙂  Ok, i will get to that, but first fascinated with hotel 🙂  So theres a really comfy bed, tv, a table, and a nice comfy arm chair. So Dan right away sits down in the arm chair, and i’m looking and thinking, it’s a room for two people, and one arm chair lol. I though i have to sit or lay on bed whole time? No way lol. So i went downstairs and asked for another chair! lol They gave me the strangest look, but said ok, and brought one up 🙂  

On the second floor was a patio, and it was gorgeous, had a roof on it, and you could sit and watch all the traffic going by. We even saw three skateboarders, skateboarding along with a bottle of beer in their hands! lol lol Tons of limo’s going by, was really awesome. So we went back up to the room and ordered pizza, hadn’t had supper yet. And i had a very comfy sleep, mattress was so comfy. Dan had trouble sleeping. But i didnt know that, i was sleeping LOL Dan has poor circulation in his legs, so the long drive made it so when he tried to sleep, his legs were jerking a lot, and that kept waking him up. So i know if we had driven to the summit in the morning, instead of coming out night before, his legs would have been real sore during the summit, so it was very good that we did it this way, and it was a very nice experience for us too 🙂

 So got up in morning, made our nice cup of coffee, and then went down and sat on the patio to have our coffee, very nice. And then we packed up our bags, and checked out, and walked over to the summit, threw our bags in our car, and went upstairs to the meeting.  Oh yeah, am i sposed to be talking bout the summit? 🙂 Ok, i’ll go get a cup of coffee, then write all about the summit 🙂

The Summit

So we got to the summit, just on time, because we had to walk forever through the hospital to try and find it lol 🙂  So we got there, and there was Carly 🙂 and she had a table all set up, selling tickets for the raffle quilt. And when i got there, she was telling everyone, here’s the quilt lady! 🙂  So i took the raffle quilt along, and she put it out on the table, she did such a nice job setting up this table, and this is all on her day off, her time. Was so nice of her. I gave Carly her tote bag, and she just loved it. Then we hurried inside the lecture theatre, and sat with my parents, hadn’t seen them in so long, so was so nice. Ok, so summit is about to begin, in about two mins, and what do i do? I spot Dr Michael Hayden talking with Susan Tolley, our HD social worker. So i’m up and climbing out of my seat, Dan’s like, where are you going? So i run over, i’ve never met Michael Hayden, and i wanted to meet him, so i decided this was a good time lol. So Susan when she saw me coming, she introduced me to Dr Hayden, and he shook my hand and smiled, and i told him i’m “the quilt lady” lol. He laughed and said so nice to meet you, and then he went and sat down, and i quickly gave Susan her tote bag too, and she just loved it. Ok ooops, summit is starting, so i rush back to my seat.

The first lady talked for about a half hour, but i don’t remember what she talked about, she just kind of welcomed all of us. And all the summits across Canada were on the video screen up above, and she was saying welcome to each of them too. Most places had theatre seats like we did, and the seats werre very squishy and cramped, but we survived 🙂  There was only about 50 people at our location, and i noticed that the other locations were about the same. I thought maybe it’s too bad that there weren’t more people? But maybe people knew it would get long and squishy? I’m not sure.

Then Michael Hayden got up to speak. He was older than i thought he would be 🙂 Am i allowed to say that? lol The first half hour he was talking a lot about Arlo Guthrie, and i didnt know who he was, so most of it sounded a little strange to me, but that was ok, i knew there were others that would understand. So he’s been speaking for a half hour, and im just ready to peak i need to get out of my seat so bad, so i just decided, why not? So i just got out of my seat, and stood against the side wall, for about 5 minutes, and then i felt so much better, and then i sat down again. The next half hour, he began talking about research, and this is where my interest is peaked. I know that lately we have been discussing cure versus good treatment here a lot lately, and how at the US HD conventions, there is such hype on cure cure rah rah rah, that people walk away disappointed. I was soooooo impressed by what Dr Hayden said, and i know you guys will like this. He said he doesnt think it’s good, when people put on a cure cure rah rah emphasis. He said this just causes a roller coaster of emotions for people. He said he believes firmly that what we want is very very good treatments, that can prevent symptoms from getting worse, and with good treatments, get to people with these treatments as early as possible.

Then he started answering questions from all across Canada. There was a question about which is the best drug trial to go in right now. He said he didnt want to answer that, because he is a scientist, and he likes to see the facts, and he said if he gives a personal opinion, that could add bias. But, he said, do you all realize how far we have come? He said, five years ago, there were No drug trials yet for hd. He said, the fact that here today, someone is not asking if there is a drug trial, but what’s the best one. He said do you all see and realize what progress that is, and that this is very exciting to be able to have a question like that asked.

At this point, i am so cramped in my seat, that i took another standing break, which was just fine, then sat down again. He began talking about trials and research. He is quite excited about capase 6? i think it’s called. But he said, what he feels is the most promising way of finding good treatments is this. He said, it is better for us to do trials involving meds that are already being used for other diseases, because he said then if they work, they are already an approved drug, as compared to doing trials with drugs that are not approved yet. He said he strongly supports trials using already approved drugs, because he wants to get good treatment out there as fast as possible.

Then he went to all the trouble, to announce to all of Canada, that there was a little 10 year old girl in our audience today, that is doing an essay for school on HD. He said her question is, how does HD make bones weaker. And everyone chuckled, including him. He said HD doesnt weaken the bones. He stopped and paused, and then he said, but you’re right, it does 🙂  He then explained when someone is far along, and sedentary, any sedentary lifestyle does weaken the bones, so that was very cool 🙂

So at this point i am thinking, what am i learning today? Am i really hearing anything i didn’t already know? Did i hear any breaking research news? Is this long? And then i suddenly realized what my benefit was. I realized i wasnt really hearing anything new, but then i began to realize that that didnt have to be what i got out of it. I began looking at Michael Hayden, Susan our HD social worker, Carly our receptionist, the people from the HSC that came to speak, and i realized all these people here are here on their own time, for us. I realized i had over-come my fears. I was in a roomful of people, and i was not panicking. I was not learning new facts. I was learning new life skills, and seeing also how much these people are dedicated, that they take their day off to be there for all of us. Now i was starting to feel impressed, and thought this was quite awesome.

Michael Hayden finished his speach, and then he made a quick exit. He must have had a plane to catch or something. And so then i realized, i was so glad i got to meet him before his speach 🙂 🙂 🙂  Then Susan Tolley spoke, and Jim Goodey, and then the lady that hosted the event spoke, and then it was lunch time.

I thought the lunch was put on by the hospital, but no, here is another example that really warmed my heart. It was one family that put on all the food, they put on a really nice buffet, and put a lot of work into it.

I was so surprised, there were so many people that wanted to meet me. I didnt have a chance to be scared. I have felt lately that i need to connect more, because i have felt disconnected. I met the Abbotsford social worker, and he says are you Bob’s daughter? And i’m like yeah, you know my Dad? He says, yeah, i was just at camp with your Dad last week! So i made a wonderful connection. He runs the Abbotsford support group, about a half hour from us, and i said i might be kind of interested in going to the support group, but im panicky about going. So he said he will phone us one day, and we can go and have coffee with him, and get to know each other a bit, and talk about the support group. Another lady is friends with my sister, and she came running up to me and said she was so happy to meet me!

I was just so happy that i wasnt scared and panicky, and that i really liked meeting people, and that people liked meeting me too. I just thought there was NO WAY that i would like meeting anyone. So i am very glad i went, i did not learn facts, i learned life experience, and saw the dedication of everyone there, people that were there on their own time, just for us, that was very very awesome 🙂 My husband did good, and he really enjoyed meeting people too. He found it very exhausting, and the drive home was hard on him, but, we both had a really nice time, and im so glad we went 🙂 🙂 🙂

Ooooh, did i take any pictures? Nooooo, i forgot! lol 🙂

Thank you very much, to the Staying Strong Foundation, you gave us a very thoughtful and kind gift, that we would not have done without you.

And coming up next, soon we will be going to the World Congress 🙂

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