I'm not sure how many here are registered on Facebook, but it is a growing global community. There is a Facebook Group called Kennedy's Disease, which basically directs to the official website (here) for information. There are currently 29 members listed. Facebook also has a separate section for Causes, where Facebook members can show their support and donate money to the Cause, if they so desire. Kennedy's Disease is not listed yet as a Cause. Are any of the Administrators here interested in listing Kennedy's Disease as a Cause on Facebook? It might be a means to direct people to the official website here and provide a way of allowing people to donate to the cause. What do you think??

Robbi2, I'm a new member, my husband has KD and I think anything that will help get the information out to people would be worthwhile. I personally do not have a Facebook account, but our children do as do many of our friends. I especially like the "fundraising" possibility associated with that. I will have to ask my husband if he would like to check out the facebook group. In the meantime, I'll let our kids know about the group. Thanks for all your input...I've noticed, you are a frequent poster on the forums. Thanks again!

Welcome cdh17901 I recently did a search of 'Causes' on FaceBook and was surprised to actually find a Kennedys Disease Cause on there. I can't recommend joining it though, because it hasn't been set up to direct funds to the KDA. The individual who set it up, has directed the funds to go to a medical foundation (sorry, can't remember the name of it right now)and I couldn't find any link to any KD research being done by that particular institution. I emailed the person who originally set up the Cause, asking some questions about why funds weren't going to the KDA (not sure there have been any monies raised there to this point anyways), and she emailed me back a rather vague reply so I'm not really sure what's going on there. I have been thinking about setting up another Facebook Cause for the KDA with the KDA donation address and contact info, but I just haven't done it yet. I haven't heard any official objections (yet) to my doing that . The more public exposure, the better, is the way I see it. Meanwhile, there is a Facebook 'Group' for Kennedy's Disease which directs people to the official KDA website, which is good, so do encourage your Facebook family members to have a look! We're all in this together and there is strength in numbers

Thank you for following up on this. Yes, if you could place the KDA donation information on the web page, it would be appreciated.

FYI - I have copied the 2008 Helping Neighbors Fund Raising appeal letter below. We have taken a little different direction this year and hope it is successful.

Thanks again for your support of the KDA and this forum.
Bruce


Every few days a baby boy is born with this DNA defect

(An image of a baby boy is inserted here)

The defect is in the ‘X’ Chromosome and it makes testosterone almost a poison to his body. Since there is no treatment or cure for this defect, he will grow up not knowing when the disease will begin to attack his motor neurons and muscles. Often it begins with painful cramping and uncontrollable muscle spasms. Over time it will attack most of his muscles often making it difficult to even swallow liquids.

Since the disease is very rare, it will often be misdiagnosed as ALS. As the disease progresses, the motor neurons will begin to die and the muscles will waste away. Eventually, he will most likely require a wheel chair to move around and possibly even a neck brace to hold his head up. Many will be forced into early retirement and almost every one of them will worry about the financial welfare of their families. Pneumonia will become as feared to him as any disease because of his inability to clear the lungs of phlegm. And, if he becomes a father, he will live with the knowledge and often the guilt that his daughters are carriers of this defect and will pass it on to future generations of his family.

The disease is Spinal Bulbar Muscular Atrophy; more commonly known as Kennedy's Disease. Every day small groups of dedicated researchers around the world are trying to find a treatment and cure for this disease. Unfortunately, funding for research of rare diseases like Kennedy's Disease has been drastically cut over the last few years. That is why we need your help.

We are the Kennedy's Disease Association. We are a California corporation recognized under the United States Internal Revenue Code 501(c)3 as a publicly supported non-profit organization. Our purpose is to educate others about this rare disease and to support further research. Ninety percent (90%) of every dollar donated goes towards Kennedy's Disease research and education.

Please support our efforts by making a charitable donation today. Checks should be made payable to the Kennedy’s Disease Association and returned to me, mailed directly to the KDA, or you can use one of the other donation methods described on page two. The KDA will mail you a receipt within a couple of weeks. Thank you for your support.

To learn more about Kennedy's Disease: Visit the Kennedy's Disease Association web site at www.kennedysdisease.org or email us at info@kennedysdisease.org .

________________________________________
Here is how you can help today:

MAKE A DONATION

1. By Credit Card - Currently there are two ways of making a tax-deductible credit card donation. Both services use Secure Servers to process and route credit card payments to non-profit organizations.
a. Google Checkout –
Go to this web page: http://www.kennedysdisease.org/help.html and under Google Checkout click on the “Donate” button.
b. Network for Good –
Go to this web page: http://www.kennedysdisease.org/help.html and under Network for Good click on the “Click Here to make a Credit Card Donation”.

2. By Mail - Send a tax-deductible donation (check or money order) to:
Kennedy's Disease Association
P.O. Box 1105
Coarsegold, CA 93614-1105

3. By Stock Transfer - Make a stock transfer through www.ameritrade.com . To receive more information on this type of transaction contact the KDA at info@kennedysdisease.org .

4. In Remembrance - Remember the KDA in your will, living trust or memorial request.

5. Donate Your Time or Services - Get involved with the Kennedy's Disease Association. For more information, contact the KDA at info@kennedysdisease.org .

6. On-line Shopping – When you go shopping through this web page: http://www.kennedysdisease.org/help_shopping.html the company you buy from will donate a portion of the sale to the KDA. You must enter the company’s web page by clicking on the links shown on the above web page in order for the KDA to receive a donation.

Some of the companies supporting the KDA with this program are: Walmart, Amazon.com, 1-800-Flowers, Flowers.com, 1-800-PetMeds, Plow & Health, Lane Bryant, The Franklin Mint, Bionaire, Problem Solvers, and Giveline.
________________________________________
CANADIAN DONATIONS
Our Canadian friends can now make tax-deductible donations directly to a Canadian laboratory that is conducting Kennedy's Disease research. For details, go to: http://www.kennedysdisease.org/help.html and see the “Canadian Donations” section.

This is great, Bruce. Do I have permission to cut and paste this when setting up the Cause for KD on Facebook, or is there somewhere I need to write to get an official 'ok'? May I use their picture of a baby boy, or insert another one? I appreciate any advice you can give me in this regard, thanks

Yes, you can use the information posted or in the PDF that was sent out today. The picture in the PDF is from Microsoft's web clips so it is not proprietary. Thanks for helping to get the word out. Bruce

Great! Thanks Bruce Now, is there a website where I can go to download the .pdf file? Your help and support is much appreciated, thanks.

Robbie, you should have received the email notification from the KDA today. If you didn't get it, send us an email asking to be added to our distribution list.

Here is the link to the Helping Neighbors Fund Raiser for this year http://www.kennedysdisease.org/help_fundraising.html. Click on the "Helping Neighbors Appeal" to download the PDF.

Thanks again for your help.

Got it! Thanks Bruce. Facebook seems to be having some tech problems today, but I will work on getting this set up and will let you know when things are in place.

Ok, I guess my setting up a Cause for the Kennedy's Disease Association on Facebook is a bit more complicated than I first thought. I think the administration or BOD of KDA will need to take a look at doing this, if interested. It seems to entail partnership with the Network for Good (www.networkforgood.org), and I'm not sure who they are or whether they expect a portion of funds collected. Perhaps I was a bit premature in suggesting this way to fundraise for KDA, but there are many registered charities collecting donations in this way on Facebook, and I just thought we might be able to do this too. If someone from the KDA administration looks into this and decides to set this up, Go to http://apps.new.facebook.com/causes/ to register for Facebook, or sign-in if you are already a member of Facebook.
Click the "Start a Cause" button. There is a place to choose a Beneficiary from there. I got to a place where the registered charity information for the KDA popped up, but I couldn't go further because I didn't register the charity, Terry Waite did I'll be first on the bandwagon to jump on if this Cause does get set-up on Facebook, but at this point, I feel it requires more research by the KDA BOD or Admins.

Thanks, I have forwarded your message on to Terry. We are already set up with Network for Good, so it should not be a problem.

Great! I look forward to being able to join the Cause when it's on Facebook and featuring it on my Profile page. Thanks Bruce

Is there anymore news about the Facebook Cause? I just signed up for Facebook and am still trying to find my way around it and would be interested in adding this to my information as well. In the meantime, I'll see if my kids can help me out and give their mom some advice for a change!

Facebook Update

Have you visited the Cause page recently? The Monties developed the page and there is already 95 friends and over $400 in donations. If you haven't been to the page recently, take a look by following the link below.

KDA Cause Page in Facebook

Yippee! I will check it out after I leave these forums!