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Archive for September, 2009

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!

 

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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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