I was wondering if anyone new if a webpage has been set up to sell those rubber/elastic type bracelets that are becoming all the fade with cancer folks and others. It would obviously be something we could sell that is hot and raise money for all our cause. I wanted to see if it's out their before I ask my buddy to make some out of his shop for myself to distribute and raise money for my local chapter. Any information would be helpful and I wish everyone the best as I am at risk and 38 yrs old.

Wanted to make sure I was clear

I am writing to ask you whether anyone in the HD community has taken on making some of those rubber/elastic awareness bracelets that are all the rave right now. My thinking was we can get these things made up and raise money and awareness for our never ending cause. We can make them purple was my thoughts for the color of the flower (petunias) that Rich Jorgenson was trying to deepen when he ran into RNAi(which is promising. I hope you read this in the spirit it is being sent as I am not trying to make a single dollar as I am an at risk person of 38yrs old watching family members suffer. I just thought we could send these to the many people in the public eye who we know are affected by this disease or at least sell them and raise some money.

I think it's a great idea and I don't know of anyone who is doing this. I'd buy and wear one.

Count me in, I will buy several and wear one. Good Idea..thanks for sharing


Linda

My company sells those wristbands, we only need what inscription will be used and choose a color that hasn't been used already like pink, yellow.
Ken
P.S. my wife has hd
888.663.0141
Purple Buffalo

Let's get this going! I'll buy a bunch!
What do we do to set it up?
We need a sponser or someone to foot the initial bill and then get re-paid for the actual cost of the bracelet and donate the rest to HDSA or wherever. We could get them selling at the Hoop-a-thons.
~Audra

Hello this is Ken,
500 bracelets are .59 each my cost and hd's cost, with a 250.00 initial setup,
colors are black grey purple lt blue blue green yellow orange red maroon pink white cream beige. Does Huntingtons have a color??????

The online community has done some fundraisers over the years with a pin made of a crossed purple ribbon fixed with a purple heart. The idea being that everyone dealing with HD deserves a purple heart! What would it add to the cost to have Cure HD and a heart symbol added to the bracelet?

Would men wear a purple bracelet?

Did I do the math right - if I ordered 500 bracelets from your company, it would cost 545 for the first time?

Marsha

I have one guy getting me a quote on these also and I think purple would work for men and women.

I was thinking about the distribution issue. If these were sold individually by mail, then postage would cost more than the bracelet. I've checked the other websites (Lance Armstrong foundation and Susan B. Komen Cancer Foundation) and I notice that the other bracelets are sold in quantity.

One thing that people have done in the past is to sell things to HDSA chapters for them to resell and make money. That's one possibilty for distribution and the profits would go to the HD cause.

I once sold HD buttons that I made (they are in the photo gallery) at an HDSA convention and donated the proceeds to research (they read Cure HD, Make this the Last Generation, Support HD Research, and the very popular HD sucks with a lemon face). I think I sold 700 at $1 each.

Does anyone have any ideats about distribution?

I sent a similiar e-mail to Renee at the HD society of America, but have not heard back. I was thinking we could buy some in bulk them get on other HD sites as see if we can advertise them on there as long as the money goes to them. We obviously need to make sure we have something set up to show the money is going directly to fight HD and we aren't making a penny.

Ken, if we can generate enough real interest and get some commitments from people to buy some decent quanities. I will foot the upfront bill and have people send me their share of what they want. i'll take the risk if it's real. How do we get some folks out there to generate soem interest on other sites. What would we need for me to put up $500 or $2000 ?

Thinking about the other HD sites.... They would be national HD associations, HDSA chapters, the Stanford HOPES site, and personal sites. We could ask the HOPES students if they'd be willing to sell the bracelets and donate the profits to research - they would have a huge campus as a marketplace.

The personal sites - like the HD Lighthouse, etc. wouldn't have a distribution method, although I would think they'd be willing to publicize the fundraiser (we'd certainly do that on the Lighthouse). The Guthrie Center is another possibility.

Marsha I just sent out an e-mail to the head of every state chapter and I see what I get in return. If you send me your e-mail address I will send you what I sent. Mine is dan.paxson*at*deluxe.com

I have the photos(someone internet savy can e-mail me and i will send it to you) and actual colors available, we can put a heart on it and hd, Purple Is great for men and women and it would at least cause people to ask what it is when seeing it and create even more awareness.
Marsha, i still have not heard from my pa congressman in regards to that bill that was rejected, i'm kinda feelin i won't either, government people like to stay away from sticky situations. As well, i was on the radio the other day when they had a rep from social security on, i told them about my situation and about hd and i asked if medicare would be made available for people with terminal illnesses quicker than the current 2 year waiting period, and they have made adjustments for other terminal illnesses but have no plans of including HD within that realm.

Our idea has been forwarded up to National by one of the chapter presidents. I will keep you all informed.

My email address is marsha*at*hdlighthouse.org. Daniel, go right ahead and send or forward any messages you want. Ken, send me the picture and I can get it up for people to look over.

What a great idea! I know that alot of the bracelets have some kind of positive word on them rather than the illness...like hope or friendship. It be great to put "faith" or "promise". I'll buy a hundred!
Christine

Sounds like an excellent idea? Suzanne had made a post on what could be done as a community to help the cause, and get the message out there some time ago. Reading all the previous postings, I wish to do my part. Just some thought's here? Someone has to manage this whole process, some awarness needs to be done, perhaps bringing the cause to the media to help identify the bracelet. The other aspect that makes me wonder is, what does the HD chapters actually do with the money, outside of research? Has anyone ever seen a breakdown of where the money goes? I for one would like to see the money go to families whom truly could benefit from it now. Perhaps a portion could be used to give families the monetary help they so badly need? I think this community, should this idea work, will need someone to oversee the revenues generated. Maybe some kind of relief fund to families affected based on need can be established. I for one feel the humanitary cause r/t the revenues raised, would help families struggling with the disease, to make it just a little easier? Helping to buy equitment, and things needed in home that medicare or medicaid may not pay for? Just a thought here. Lastly, to honor Jerry the former keeper of the lighthouse, although I never knew him, if someone is in touch with his family they can tell us what his favorite color was. This can be the signature color giving a deeper meaning to our cause. Let's pray, this is the year of HD's end.

Respectfuly,
A.

Where can I get these HD bracelets?..