On July 24th from 4 - 9 pm there is going to be an event which will serve an all-you-can-eat Jamaican Grill Buffet, live music, tons of great raffle items, and an outstanding silent auction.

It is set to take place at the Coonamessett Farm in Falmouth, MA. Click here for directions. [www.coonamessettfarm.com]

Tickets are $25.00 PP and include your meal and entertainment. They can be purchased on-line here: [capecodhdawarenessfundraiser.blogspot.com]

The money raised is going to the New England HDSA. However, their real goal is to educate the local population about this disease, and try to improve all HD services through greater awareness on Cape Cod. Many local medical professionals will be attending, as well as members of the fire and police stations.

So far, their efforts to me, have already been successful, as several families have purchased tickets saying they had HD in theirs, but never told anyone, or knew anyone else even knew what it was. I should also note the organizers themselves are not directly affected by HD, but wish to help us out. I can't tell you how both of these things make me feel.

Anyway, if you are anywhere close to MA over this weekend I would love to see you there. It is hard to beat the Cape this time of year.

Thanks for reading and feel free to help spread the word about this event to your friend who may wish to come.


-Brett T

PS Let's Cure HD!!!

"So far, their efforts to me, have already been successful, as several families have purchased tickets saying they had HD in theirs, but never told anyone, or knew anyone else even knew what it was. I should also note the organizers themselves are not directly affected by HD, but wish to help us out. I can't tell you how both of these things make me feel."

This is where or how a second beginning of HD awareness should be. Hope these "new" old people with HD find a new home. Self awareness is the key to a good foundation. Community awareness will follow. If the spirit is correct the fund raising will follow an be a success.



Edited 1 time(s). Last edit at 06/28/2010 09:31PM by Eric.

Wish I was closer!! Sounds like my kind of fund raiser!!

Wish you the best!!!

Have a great weekend!!

DCB
*Living for today*

This sounds very very cool Brett!!!

Brett- I want to thank you so much for the head's up here. I would love to bring my mother who is HD+. She tends to march to the beat of her own drum (that's not new) and because she has become very introverted (that is more new) it's hard to tell what she is thinking/feeling- I mean in terms of attending support groups/events, etc.as she has become somewhat of a shell of her former self . I've often felt like maybe it would be good for her to meet others with HD - but we haven't done anything yet. And she would never ask me either- that's just the way she is. We live about an hour and a quarter from Falmouth (my brother married at the Coonamessett in '07' so perhaps we will see you there! (She does love the Cape)

Hey Brett I have one question..

How did you get all this organize all this. I'm trying to start one here in Texas and I have no idea where to start.


Thanks,

Liz

Thanks all for your kind words of support.

carell - I think it would be so wonderful if your family could make it. If there is anyway I could help out with that please let me know. The New England Development Director Virginia Goolkasian will be there to give a speech, and I hope this turns into an opportunity for you to meet many new friends. Send me a private message should you have any questions or again if you can think of a way I could help your mom get there.

lizceja- let me 1st say get in touch with BJ Viau ( he is on this board ) and tell him what you are thinking. There is no one better to help you out with this and I know he would be happy to do so. Watch this short clip to see what I mean:

[vimeo.com]

How this event started was not by me at all, but by my old high school friends ( many I had not seen in 20 years ) becoming inspired to do something after watching a you tube video Matt made. I had recently posted something about having HD myself on facebook then shared this video and it did its job:

[www.youtube.com]

They took it from here. Formed a committee and started the planning ( all without telling me ). After they knew they had enough interest, resources, and people wishing to help make it happen they contacted the local HDSA office, and let them know what they were up to. Let's just say Virginia was as happy about this news as I was. They have a budget for events like this, but this budget was all spent or spoken for so, by my friends doing this all on their own this may end up giving them a nice little boost they were not planning on having. Since then it has really been a snowball picking up more and more people wanting to get involved and donate for the cause.


Whatever it is you think you may want to do I would focus mostly on awareness and not worry too much about how much money it makes. By creating a little of this in your area you could end up reaching a family who feels all alone, and this alone is worth it to me.

Sorry if I wrote more than you were looking to know, but get in touch with BJ, and if you have trouble doing so get back to me, and I will pass your contact info on to him. You will have a hard time meeting a nicer guy.

Finally I should also add you may wish to recruit help to organize this on Matt's 'Huntington's Disease Youth Association' facebook page. ( I am guessing he won't mind and may also give you some pointer, as he is right up there in planning this stuff himself and being a good man).

-Brett T

Brett, this is amazing. What great friends you have to do this. I hope you can remember this feeling always. As well as how wonderful it is that you're doing your part now that you found out about it.

I wish I were closer/had the weekend free. But so glad to hear that you HAVE such great support, and are paying it forward too.

I hope the event itself is enjoyable too.

Hi Brett- and thank you! I actually did not need to convince my mom at all- she eagerly agreed right away. So , we will see you there. We're both excited. Thanks again- I will be ordering tickets shortly.

Brett, i thought the event looked awesome on it's own, but now you posting how your friends started this, and because of Matty's video, that is really the best feeling, isnt it. I love Matt's video too, posted it on my facebook a few months ago, because his video inspires such a feeling of hope

Sara & Barb, I agree how amazing this whole thing is, thanks again for your post.

Carell, you just made my day, and I look forward to meeting you both.

-Brett T

PS The group has set up a facebook page if any of you would like to join to learn more about what is planned or show your support - search under "Cape Cod HD Awareness Fundraise" once you login and you should find it.

how do I get in touch with BJ.

Liz,

You can send him a PM through this site here:

[www.hdac.org]

...or you could shoot me a private message with your email and I could pass this along with a note saying you are looking to plan a HD event in TX and need help getting started. I know he would get right back to you asap.

Anyway, either way I will pass on to him that we spoke and ask him to find you here. I am happy you have been thinking about doing something like this and wish you lots of luck. The feeling one gets from taking this action is unbelievable ( again I am not directly doing this now, myself, but have been helping my friends out in my own way and I have to say it feels good to take a stand against HD ).

Brett T

Liz-

I hope I can live up to Brett's reputation to help, but I will try my best and please reach out to me at hoopathon@yahoo.com .

I love new fundraisers so I will look forward to helping you get something started!

BJ

Likewise Brett! Thank you and we look forward to meeting/seeing you all. .

Brett - I bought a ticket but won't be able to attend. However, if I win the Lexus in the raffle I'll come pick it up. :-)

Will

Thank you very much for doing this, Will and to those others on here who have done the same ( but I should mention the raffle is not for Lexus this year, but instead a vintage Duesenberg J /SJ /SS ) I will still let you know if you win, though.

Also, I just learned the organizers just set up a fistgiving page for this event so, if some of you others cared to support their efforts in ANY amount I know they would appreciate it. Again, the money here is going to the NE-HDSA.

I don't know maybe some of you would buy me a beer if we met, but in truth I would rather see $5.00 being thrown down here so, if you can't make it, but would like to do this instead I will gladly say CHEERS!

This is the best I can muster as a plea to support my friends ( and all of us ), sorry.

Here is that page:

[www.firstgiving.com]

-Brett T

PS For those of you who would not buy me a beer please feel free to give 5 bucks, anyway. I will not take as a sign you like me, I promise