Thousands visit to learn about HD Pie in the Face Challenge

 

What a fantastic turnout the world is making!

Thank you for helping this challenge explode. If you’ve already taken the challenge, you’ve taken a huge step out of the darkness on behalf of HD! Videos are pouring in. You can see them and post them on the Facebook page “HD Pie in the Face Challenge – Huntington’s disease” or on our new Twitter account @HDpieintheface. Today I’ll talk about worldwide impact, then list some information about HD so you can sprinkle a few facts in your challenge videos to increase people’s understanding of the disease. After that I’ll explain where donations go and how to post your challenge videos.

World famous and local heroes take Challenge to the next level 

James Franco, actor, writer, teacher, student, and all around renaissance man retweeted the HD Pie in the Face Challenge to his 2.4 million followers! You know how rumors start, and many people now believe he actually started the challenge! I think that is all the more reason for him to take a pie in the face. He is fated to do so! So if you have time, go to Twitter and challenge him.

Franco isn’t the only person making a big impact. William Shatner visited this blog, and his feedback was useful. Eleanor Patrick, elementary school principal, challenged her entire teaching staff and the entire Human Resources Department at her school system. Matt Ellison, founder of The Huntington’s Disease Youth Organisation (HDYO), took a pie and then challenged all children who were crazy enough to accept the challenge!

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 deductibleHowever, 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 http://www.hdsa.org/how-you-can-help/index.html 

or mail your donation to

HDSA
505 Eighth Avenue
Suite 902
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.

If you do upload your video as a Facebook video, be sure to 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.

Ideas for Challenges

To keep momentum going we need to make celebrity challenges. Some suggestions are the cast of the TV show House, Charles Sabine and Trey Gray. Or just choose your favorite celebrities and go for it.  Also you can contact the PR department of your favorite professional sports team and issue a challenge to an entire team. 

On the local level, make challenges big, like Mrs. Patrick did. Challenge your whole school, your whole graduating class, like Nina Reynolds Fette did, your whole church congregation, or all of your coworkers. The possibilities are endless.

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!!!

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One thought on “Thousands visit to learn about HD Pie in the Face Challenge

  1. Hi Sarah: Thanks for starting this challenge. As I awaited being challenged to the ALS Ice Bucket Challenge, I pondered a way to somehow turn the attention (not away from ALS) but ALSO to HD. I have family members who have passed from complications from HD and some fighting the fight. I was so glad to learn that you started this challenge already so that I didn’t have to brainstorm about how to create something that could possibly take hold like the Ice Bucket Challenge. (Has to be easy, fun, inexpensive, etc.) GREAT JOB in hitting all of those points and MORE! I will be doing the challenge with my family as soon as I sort out the facts to list (thanks for those in your post!) and confirm donation links to attach to my post. On that note, I clicked on the donate link above and it said “There was an error.” Not sure if this particular one might work better…

    https://www.hdsa.org/how-you-can-help/donations.html

    God bless you and your family!

    Liked by 1 person

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