1961mom Posted March 4, 2013 Share Posted March 4, 2013 Clusterbusters advocacy team needs your help! We created a fundraiser and published it on "Causes" just a few days ago. We've already raised $1025.00! Using the "Causes" online platform is great because it allows us to see exactly how many dollars are being donated to the specific event. Clusterbusters recognized that many who have the passion to represent our patient group at the Capital may also need assistance for things such as travel money in order to be able to attend the event. Our goal is to match funds with passionate people! Applicants to the event have requested $5915.00, so you can see we still have a ways to go in order to meet all the requests. Here's the link and the entire fundraiser as it appears on Causes. What I really like about Causes is that they offer several ways to get the word out, including Twitter, Facebook and Email. I've been amazed at the responses from my email contacts! Please click on the link, share with your contacts too! http://www.causes.com/actions/1735190-funding-headache-on-the-hill-advocacy-project-10-at-a-time [move]     "Headache on the Hill" Advocacy Fundraiser Project Needs Your Help    [/move] We've all had a headache or two in our lives, right? If you've ever experienced a headache, click and donate $10! Better yet, donate ten a Jefferson's! In honor of President Thomas Jefferson who also suffered from headaches and chronicled his experiences in his journals. 1764 March 20. (Jefferson to William Fleming). "I will endeavor to answer it as circumstantially as the hour of the night, and a violent head act, with which I have been afflicted these two days...My head achs, my candle is just going out..." http://www.monticello.org/site/research-and-collections/headaches According to the World Health Organization primary headaches (migraines, cluster's, SUNCT) are the 19th leading cause of lives lived with a disability in the United States. Nearly 60 million US citizens will suffer a migraine this year alone. Half will go undiagnosed, left to treat the pain with over-the-counter analgesics. Imagine how the number increases when you expand the demographics to include ALL untreated primary headache patients (cluster headache, SUNCT, et. al) to the entire world! It's incredible to think with the prevalence of this patient group, experiencing such relentless pain, that it is so widely overlooked and marginalized by health care systems. Having a primary headache disorder is NOT a weakness. Headache disorders are a malfunction of the brain and can be seriously disabling. Increasing the amount of research provides the platform for new treatments! Help the "Headache on the Hill" team convey this message to Congress & the National Institute of Health by donating $10 now (about the cost of a bottle of Advil). The Alliance for Headache Disorders Advocacy (AHDA) is an organization started by health care providers in 2007. United in an assembly of equally concerned organizations, the AHDA and their members went to congress and began the conversation in regards to this patient group. Detailing the impact of neglect, emphasizing the most recent treatments are over 25 years old, and the need for federal remedies. In 2012, 62 participants from 33 states visited 120 congressional offices. Learn more about The AHDA by going here.... http://www.allianceforheadacheadvocacy.org/ Learn more about the event by going here.... http://events.r20.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07e6y8jz2d093250aa $10 will make a difference! CLICK-DONATE-SHARE Thank you for your support. 100% of the funds raised through this cause will go toward assisting participants of the Clusterbuster advocacy team carry this message to Washington DC. In order to ensure the success of this trip, those who have the passion to participate rely on your generous donations. Please help ensure this trip's success! Again, we thank you for your support. Quote Link to comment Share on other sites More sharing options...
blueballs Posted March 4, 2013 Share Posted March 4, 2013 You could learn a lot, from a motivated Mom....lol Quote Link to comment Share on other sites More sharing options...
1961mom Posted March 7, 2013 Author Share Posted March 7, 2013 Sequester my hynnie! lol Storm the castle!!!!!! (hynnie is a word, right?) :-? Fundraiser is up to $1,325.00 now! Quote Link to comment Share on other sites More sharing options...
1961mom Posted March 16, 2013 Author Share Posted March 16, 2013 Wow! Thank you! We're up to $1350.00 With just a little over 3 weeks to go before your cluster headache patient team hits the Capitol steps, (representing all primary headache patients) we're challenging you to set a goal of donating $10 or encouraging another someone to donate $10! That's easy, right? I was amazed at the positive response I received when I emailed the fundraiser to my email contacts. From incredibly kind notes of support for living a life with this horrible pain to a very generous friend giving $500.00! Really surprising because these are the same people I've shared with over the years and believed they were less than empathetic. It's almost as though going to Congress underscores the severity....I mean, who goes to Congress over a headache? Right? After you've sent the fundraiser out to your email contacts (or shared on social media....I think there's a hashtag for twitter #headacheonthehill too) Please pop over to the Advocacy thread to read more about what we'll actually be doing when we get to our meetings. And then take a peak at the Clusterbusters team map! We've nearly doubled our team size from last year. 21 cluster headache advocates for HOH 2013. I expect this years entire team to be near 80 total advocates!!! http://www.zeemaps.com/map?group=500380 Quote Link to comment Share on other sites More sharing options...
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