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ALS Ice Bucket Challenge - FAQ

General

What is the ALS Ice Bucket Challenge?
The ALS Ice Bucket Challenge started in the summer of 2014 and became the world’s largest global social media phenomenon. More than 17 million people uploaded their challenge videos to Facebook; these videos were watched by 440 million people a total of 10 billion times. It is now an annual event to raise awareness and funds to find treatments and a cure for amyotrophic lateral sclerosis (ALS).  

View this infographic or watch this helpful how-to video.

How do I participate in the ALS Ice Bucket Challenge?

  1. ACCEPT: Accept the challenge;
  2. RECORD: Take a video of yourself dumping a bucket of ice water over your head to increase awareness of ALS;
  3. UPLOAD: Upload your video to social media, tagging/challenging at least three of your friends;
  4. GIVE: Make a donation to support the ALS community.

Do I have to donate if I take the challenge?

No, by participating in the ALS Ice Bucket Challenge you’re already raising awareness of the disease! Making a donation, however, will help drive forward the search for treatments and a cure for ALS by funding cutting-edge research and supporting people living with the disease. So participating and donating is ideal.

Do I have to be challenged to participate in the ALS Ice Bucket Challenge?
No! If you want to take the ALS Ice Bucket Challenge, do so, and be the person who gets the ALS Ice Bucket Challenge going this year in your community by challenging your personal network of friends and family members.

What if I live in a drought area, should I still take the ALS Ice Bucket Challenge?
Yes! Here are some ideas for how you can still participate in the #ALSIceBucketChallenge if you live in a drought area: Take the challenge in an existing body of water (lake or ocean, for example); be creative and fill your bucket with an alternate substance like spare button, kale or good karma; or, bypass the first few steps of the challenge and make a donation to support the ALS community.

Who started the ALS Ice Bucket Challenge?
The ALS Ice Bucket Challenge existed in the sporting world and had been used with other causes in the past. It started with a professional golfer named Chris Kennedy, who challenged his sister, Jeanette Senerchia in Pelham, New York. Jeanette’s husband Anthony has ALS. Through Facebook, one of her friends was connected to Pat Quinn in Yonkers, New York, who was connected to Pete Frates in Boston, Massachusetts. Pat and Pete are both young men battling the disease and their social networks blasted the ALS Ice Bucket Challenge out of the Northeast to places across the country and even the globe. Watch co-founders of the ALS Ice Bucket Challenge talk about it here.

Will the ALS Ice Bucket Challenge take place again this year?
Yes. The challenge will take place this August and every August until there is a cure.

When will it start this year?
The founders of the ALS Ice Bucket Challenge will kick things off in a big way at the end of July so that people can include the ALS Ice Bucket Challenge in their summer activities for the entire month of August. It will again be a fun and exciting way for people to get involved in supporting a very worthy cause.

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How to Donate

How do I donate?
Click here to make an online donation. Or, you can mail a check made out to The ALS Association, PO Box 6051, Albert Lea, MN 56007. A form to include with your donation can be found here.

Can I direct my donation to go towards research?
Absolutely. You can restrict your donation to research during the donation process.

What if I want to support my local chapter?
You can donate here and indicate you would like to support your local chapter. Or you can make a donation directly on your local chapter’s website. You can find your local chapter here.

Why should I donate to The ALS Association?
The ALS Association is leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people living with the disease to live fuller lives by providing compassionate care and support. To find out more visit ALSA.org.

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About The ALS Association

What does The ALS Association do?
The ALS Association’s mission includes providing care services to assist people with ALS and their families through a network of 39 chapters working in communities across the nation and a global research program focused on the discovery of treatments and a cure for the disease. In addition, The Association’s advocacy efforts empower people to advance policies in our nation’s capital that respond to the needs of people with ALS. It is through this integrated approach that we are able to support people living with the disease, provide them with vital benefits, and ultimately find a treatment and cure.

What is The ALS Association’s annual operating budget?
The ALS Association’s annual budget is typically around $20 million. Since the ALS Ice Bucket Challenge, The Association has been able to significantly expand its programs and services, increasing its annual budget to about $40 million for the current fiscal year. A federated organization, The Association is comprised of 39 chapters which operate as separate corporations with their own budgets and financial statements. However, we are firmly associated by our governance structure and unified in achieving our mission.

Where can I read more about the finances of The ALS Association?
The ALS Association has posted financial information and documents here. Our new 990, financial statement for the year ending January 2015, and annual report will be posted as soon as they are available (Summer 2015). To view the financial statements for each of the chapters, you can visit their respective websites. To find your local chapter, go here.

How does The ALS Association use its annual budget?

  • Research: We lead a global research initiative, bringing together scientists from around the world with academia, government and the pharmaceutical industry. We fund research to find the causes of and treatments for ALS, with the ultimate goal of finding a cure for the disease.
  • Patient and Community Services: Our Care Services program provides compassionate care and support for people living with ALS and their families. Our 39 chapters assist those living with ALS by offering them access to loan closets, support groups, and information about local resources to help them better cope with the demands of this disease. In addition, our Certified Treatment Centers of Excellence deliver the best of multidisciplinary care to individuals with ALS, and our Recognized Treatment Centers serve the medical needs of those living with the disease.
  • Public and Professional Education:  The Association educates healthcare professionals, scientific communities and the general public about ALS and the work we do in assisting those battling ALS. We work with national and local legislators as well as government agencies to advance legislative policies that benefit ALS families. Each year, The Association hosts a National ALS Advocacy Day and Public Policy Conference where members of the ALS community travel to the nation’s capital to educate Congressional members about ALS and to share their stories about how this disease has impacted their lives..

What external sources can tell me about the fiscal health of The ALS Association?
The ALS Association has the highest four-star rating from Charity Navigator, is “Top Rated” on Charity Watch, and is a Better Business Bureau accredited charity. The ALS Association is also a Guidestar Exchange gold participant. We encourage you to visit each of these websites to gather more information about our organization. Each of our chapters is listed separately on these websites.

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Donor Stewardship

How much money did The ALS Association receive from the 2014 ALS Ice Bucket Challenge?
During a six-week period (August through mid-September 2014) The ALS Association received $115 million. We are extremely grateful for this outpouring of support, which is making an incredible impact in the fight against this disease.

How much of the 2014 ALS Ice Bucket Challenge dollars have been spent?
A significant portion of the dollars raised through the 2014 ALS Ice Bucket Challenge have been committed to various projects to help expedite finding treatments and a cure for the disease. We recognize the sense of urgency within the ALS community, and that’s why we’re investing in multiple projects that we feel will yield the most significant results for people living with this disease now and in the future.

Can you give me a breakdown of how the 2014 ALS Ice Bucket Challenge dollars will be allocated?
This infographic explains the breakdown of how we’re putting 2014 ALS Ice Bucket Challenge dollars to work.

We are funding projects that not only provide care to people living with the disease but also support the broader research enterprise. A treatment won’t be found in a lab; it will be found in people living with the disease through their participation in clinical trials. So this integrated approach to expediting treatments is part of our strategy for hitting this disease head on.

Over what time period will you spend this money?
These percentages reflect expected spending for several years. A full accounting of dollars spent will be included in our annual 990, which comes out every summer. It’s important to note that dollars committed will far exceed dollars spent. It’s imperative that we promise and fulfill the obligations we’ve made to fund research projects over one-, two- and three-year periods.

How did you arrive at this breakdown?
The ALS Association’s leadership met with key stakeholder groups to provide input into a plan to spend the money. These groups included our Board of Trustees and related committees, Board of Representatives, and 39 chapter executives from across the country. Input was also gathered from a panel of advisors made up of people living with ALS.

Who is on The ALS Association’s panel of advisors?
These individuals are people living with ALS that our President and CEO, Barb Newhouse, has met with personally on her visits to chapters of The ALS Association or via social media/email. Out of respect for their privacy, health and well-being, The Association has left the decision of sharing their participation on this panel with these individuals.

Why should people donate to The ALS Association again this year?
The ALS Association is committed to spending dollars wisely in order to achieve maximum impact for those living with the disease. We are good stewards of the donated dollar and are committed to transparency and accountability. It takes almost $2 billion to develop one new treatment. That’s why it’s critically important that we all work together to continue the momentum that the ALS Ice Bucket Challenge started.

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Research

How has the ALS Ice Bucket Challenge accelerated ALS research?
The challenge has energized the research community, and The ALS Association has laid out a plan to triple the amount we spend on research ever year. The challenge has also offered additional resources to pursue new programs, greater collaborative efforts and novel ideas. Most significantly, these added resources have enabled an accelerated timeline in treatment development.

What is the strategy behind The ALS Association’s research program?
The Association’s overarching strategy is to fund multiple initiatives with the understanding that a few may yield significant results leading to the development of potential treatments. The ALS Association is uniquely positioned to lead a worldwide research effort. In order to speed the development of new treatments our research program focuses on pursuing the best new ideas, funding the most promising research and catalyzing collaborations and partnerships among the best scientists. We are able to support novel, often risky ideas that have potential for very high reward. Programs range from supporting small exploratory studies, research focused on developing treatment approaches though academic and industry partnerships and clinical studies to improve the quality for life of those living with the disease and exploring new treatment options thorough phase II clinical trials with a strong biomarker program.

What major new initiatives did The ALS Ice Bucket Challenge enable?
The Association is investing in four cooperative alliances over the next one to three years involving research that has been identified as critical to finding new treatments for ALS: ALS Accelerated Therapeutics (ALS ACT), The New York Genome Center, the Neuro Collaborative and Project Mine. There will be synergies between these four initiatives that will increase the quantity and most importantly the value of data openly available to the ALS research community worldwide.

How did you decide to fund these research initiatives?
Under the leadership of The ALS Association’s Chief Scientist, Lucie Bruijn, Ph.D., M.B.A., The Association has been involved in the planning of each of the new research collaborations, and in each case has sought the advice and evaluation of the world’s leading researchers to assess scientific merit, gather additional ideas for each project, and ensure the maximum relevance to future therapies. Scientific advisors have been appointed for each of these initiatives to provide oversight and review progress throughout these programs.

What other impact has been made in the research area?
The ALS Association has received significantly more applications for funding than in previous years. This summer, we will be announcing a number of new ALS research projects that we are funding all over the globe. We hope to share this significant research investment with the public very soon!

How can I learn more about The ALS Association’s research program?
Watch Dr. Lucie’s Bruijn’s presentation on The ALS Association research program at the most recent National Advocacy Day and Public Policy Conference here.

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Other

I want to get involved in The ALS Association. What can I do?
You can Challenge ALS: Participate, Advocate and Donate. Click here to learn about all the ways to engage in the fight against this disease. 

I want my company to get involved, how do I do that?
There are a number of ways to get your company engaged in the ALS Ice Bucket Challenge. Contact your local chapter or Meghan Tallakson, mtallakson@alsa-national.org.

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