We’re not a big organization like ALS.org. We’re a group of people from around the world who share the goal of raising HD awareness. Since we aren’t an organization, we will have to work harder to be heard. But the HD community is used to that, which is why now so many of us are seizing this chance to bring HD out of the shadows. Here are some ideas to help:
- The bigger the better. Challenge lots of people: your church congregation, coworkers, or high school graduating class, for example.
- Don’t be a stranger. Follow up with people you challenge to make sure they take a pie, donate, or both.
- Work it. Take Cool Whip and paper plates to work with you. Plan to film a challenge with your company after work.
- Follow the Limelight. Challenge local celebrities, like politicians, TV reporters or school principals.
- Take to Twitter. Use #HDpieinthefacechallenge for either hdsa.org or the film and/or #PieInTheFace4HD for the film.
- It’a not really stalking. Challenge celebrities on Facebook and Twitter using the above hashtags. Anybody but William Shatner (don’t ask).
- Tell it like it is. Post a frank, serious message to your Facebook friends about how important HD awareness is, and ask them to start challenges of their own as a “personal favor to you.”
- Do-overs permitted. Thought of some people you wish you’d included? Extend your challenge to include them. Call them out on Facebook or just call them up. Marie Ward challenged 30 more people today, even though she made her challenge video a few days ago.
- Meet for pie. Contact local civic groups and facilitate a Pie in the Face challenge at one of their meetings. You can provide the supplies and video it.
- It works if you work it. Make this a temporary obsession. It won’t last forever, but the more energy each one of us puts into this right NOW, the more people will know about HD and more people will donate.
Facts about Huntington’s Disease
- Huntington’s disease (HD) is an inherited disorder in which nerve cells in certain parts of the brain waste away.
- HD affects a person’s ability to reason, walk and speak.
- Symptoms usually begin between the ages of 30 to 50, and worsen over the next 10 to 25 years.
- Symptoms Include: personality changes, mood swings and depression, forgetfulness and impaired judgment, unsteady gait and involuntary movements, slurred speech and difficulty swallowing.
- People with HD always die from complications associated with the disease, such as pneumonia, heart failure, or choking on food, unless something else kills them first.
- There is no cure for HD.
- In America,one in every 10,000 people has HD.
- More than 250,000 Americans are at-risk of inheriting it from a parent with HD.
- HD is not just an American disease. It occurs all over the world. For information about the worldwide impact of HD, visit http://www.huntington-assoc.com/find-your-local-organisation.aspx
- Due to HD’s unique genetic properties, research findings in the area of HD can be applied to ALS, Parkinson’s Disease, and Alzheimer’s Disease.
- HD has been called “one of the cruelest diseases in the world.”
- Singer Woody Guthrie was the first high profile person to have the disease.
Sources: http://www.hdsa.org/images/content/2/2/v2/22556/HDSA-FastFacts-2-7-14 final.pdf, http://www.ninds.nih.gov/disorders/huntington/huntington.htm
Where does the money go? You can CHOOSE or donate to both
One recipient is a a 501 (c)(3) nonprofit and another recipient is not, but is a really great documentary
The HD Pie in the Face Challenge suggests two donation destinations:
WeHaveAFace.org is an independent, grassroots group of people from all over the world, affected by Huntington’s disease. The group’s mission is to complete production of the documentary “The Huntington’s Disease Project: Removing the Mask”. The documentary’s aim is to address many aspects of HD which are frequently ignored. After all, HD is much more than a movement disorder.
WeHaveAFace.org is not a nonprofit organization, so your donation is not tax deductible. However, you’ll be helping to produce a vital,informative documentary that deserves a spot in international public discourse. Your support will help with equipment rentals, travel expenses, promotion and much more.
To donate, visit WeHaveAFace.org/donate.
If you’d prefer to mail a check, please contact James Valvano to get his address. Make your check out to James Valvano and on the notes section of the check, please write: “Support for The Huntington’s Disease Project” Also, if you don’t wish to be named as a supporter in the film, please let James know.
Huntington’s Disease Society of America is accurately described by its mission statement:
- The Society is a National, voluntary health organization dedicated to improving the lives of people with Huntington’s disease and their families.
- To promote and support research and medical efforts to eradicate Huntington’s Disease.
- To assist people and families affected by Huntington’s Disease to cope with the problems presented by the disease.
- To educate the public and health professionals about Huntington’s disease.
(HDSA has local, state and regional chapters throughout the country.)
HDSA has non-profit status and your donation is tax deductable.)
You can donate by going to https://www.hdsa.org/how-you-can-help/donations.html
or mail your donation to
505 Eighth Avenue
NY, NY 10018
Or fax it to: 212 239-3430
NOTE: If you want your donation to go directly towards research you can indicate that preference when you donate.
How to post your video
- PREFERRED METHOD: Upload your video to You Tube or Vimeo, then you can just copy and paste the link to the Facebook Page: “HD Pie in the Face Challenge – Huntington’s disease”. We envision going viral at any moment, so if you use this method, we won’t have to search for your video and possibly miss it.
- THE OTHER WAY: If you upload your video as a Facebook video, set your privacy settings for that video only to “public” so we can share it on our page. There should be a little pull down arrow near the date of the video that will offer this option.
- Include #HDpieinthefacechallenge in your post, whether on Facebook or Twitter. That way when we find your video, we can post it to the Facebook page.
Most importantly, don’t wait for the challenge to come around to you. Start your own, take a pie in the face and challenge some friends who might not know about HD. It only takes Cool Whip, a paper plate and five minutes. And it’s fun!
If you’re new to the scene, you can catch up on the details of the HD Pie in the Face Challenge by reading my previous blog entries.
Before I sign off, I sincerely thank Melanie Barrett Nagy, my new Facebook friend, for sharing her intuition, initiative, empathy and social media skills to further this project. She started our Facebook page, our Twitter account and is working tirelessly behind the scenes to help make the challenge a success. You rule.
Start a challenge today! We’re on the verge of viral. And thanks again, James Franco!!!