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ALS Ice Bucket Challenge - FAQ

About The ALS Association

What does The ALS Association do?
The ALS Association is the only non-profit organization dedicated solely to fighting on all fronts. The ALS Association’s mission includes providing care services to assist people with ALS and their families through a network of 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 public policy efforts empower people to advance public policies in our nation’s Capital that respond to the needs of people with ALS. It is through this integrated three-prong 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 $25 million per year. This figure represents the national office budget. The Association is a federated organization comprised of 38 member affiliates 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.

How does The ALS Association use its annual budget?
The ALS Association has posted its audited financial statement online here. On that page you can see a pie chart which breaks down our expenses from this document from the fiscal year ending in January 2014. Please note that our expenses are broken down by two major types of activities as required for not-for-profit voluntary health agencies – Program Activities and Supporting Activities. Below is a brief description of what services and activities are included in each category:

Program Activities

  • Research: Our research entails involves funding for global studies to find the causes of and treatments - and ultimately a cure - for ALS. These activities encompass grants and funding for ALS research and associated costs related to our research program. This program takes a collaborative approach by interacting with scientists around the world and academia, government agencies, and the pharmaceutical industry.
  • Patient and Community Services: Our Care Services program provides compassionate care and support for people living with ALS and their families. Our 38 chapters assist those living with Lou Gehrig’s Disease 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:  Through public and professional education, The Association educates healthcare professionals, scientific communities and the general public about Lou Gehrig’s Disease and the work we do in assisting those battling ALS. Our Public Policy Department works with national and local legislators as well as government agencies to advance legislative policies that benefit ALS families. Each year, The Association’s Public Policy Department hosts National ALS Advocacy Day and Public Policy Conference, whereby 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 with these national legislators.

Can you give me a breakdown of how each Ice Bucket donation dollar will be allocated?
While research and care services to patients and their families are our top priorities, we cannot provide a breakdown at this time. We appreciate the sense of urgency that exists and are already engaged in discussions on how we’re going to put this money to work in the short term and into the future. Now and in the coming weeks, we will be able to enhance our strategic plan, reformulating and recasting strategies with input from stakeholders, including our donors, our chapters, and most importantly, people living with ALS and their families. We want to move quickly but decisively as our ultimate goal is to use this incredible generosity in a way that has the biggest impact on the disease.

The ALS Association is absolutely committed to transparency and will be communicating regularly with the ALS community, our donors, the media and the public about progress in funding projects and programs to support the cause.

Where can I read more about the finances of The ALS Association?
The ALS Association has posted financial statements online here. Our latest 990 (fiscal year ending Jan. 2014) can be found here along with our financial statement for the same period. The Association’s latest annual report can be found here. To view the financial statements from each of the chapters, you can visit their respective websites. To find your local chapter, go here.

Can you discuss your executive compensation?
Salaries of executives of The ALS Association are in line with the job markets where they are located. Routinely, The Association works with a third party to conduct a compensation review to make sure that staff salaries are competitive in an effort to attract and retain talented staff. We adhere to the standards set forth by the National Health Council, which requires review and approval of executive salaries as part of membership. Salaries are also reviewed by charity watch dog groups, which have given the highest ratings for keeping overhead costs low and expenses on programs and services to fulfill our mission high.

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 as well as a Guidestar Exchange gold participant. We encourage you visit each of these websites to gather more information about our organization. Each of our chapters is listed separately on each of these websites.

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Research

How much money does The ALS Association spend on research every year?
Last year, The ALS Association national office spent 28% of its operating budget on research—or $7.2 million. We have made commitments of far more than expended in any particular fiscal year. As of March 31, 2014, The Association has 98 active projects worth a total of $18,148,979. Earlier this August, we announced an additional $3.5 million in funding for 21 additional projects.

I’ve read that The ALS Association only spends 7% or 8% of its budget on research, is that true?
There is misinformation that inaccurately divides the amount the national office spends on research with the total expense of national and chapters combined. This presents a percentage spent on research that is misleading because chapters are not charged with administering the research program and therefore their expenses cannot be included in calculating the percent of our budget spent on research.  Chapters support our research program in other ways and the national office is charged with the cost of administering our global research program. In FY14, 28% of our annual expenses ($26.2 million) supported ground breaking research into finding treatments and ultimately a cure for the disease. The breakdown of expenses is detailed on page 5 of the 2014 financial statement here. In addition, research is one part of our three pronged mission to create a world without ALS.

How do chapters of The ALS Association support research?
All chapters support research through their portion of revenue share to the national office and some chapters make direct contributions to the national office to support approved peer-reviewed projects. Chapters play a very critical role in moving research forward in several additional ways.

  • First, chapters have relationships with people living with the disease and encourage participation and enrollment in clinical trials, which is the only way that we are going to find treatments and a cure for the disease.
  • Second, chapters encourage enrollment in the National ALS Registry, which may be the single largest ALS research project ever, which is working to help identify the cause of ALS. Learn more at www.cdc.gov/als.
  • Finally, many chapters may provide financial support directly to Certified Treatment Centers of Excellence, where ALS patients are treated and clinical studies take place.

I saw another organization tout that it spends more on research than any other ALS-related charity, is that true?
Please keep in mind that The ALS Association is the only non-profit organization dedicated solely to fighting ALS on all fronts. Other organizations may not offer support to patients and their families fighting the disease now and they may be focused on other diseases besides ALS. It is important to ask questions and figure out how the organization is quantifying the figure and where that figure is documented since some organizations focus on how much they have committed to research over a one, two and/or three year period. For example, The ALS Association spent $7.2 million last year on research, but we have committed funding to 119 projects worth a total of $21.6 million.

Is The ALS Association presently funding embryonic stem cell research?

The ALS Association primarily funds adult stem cell research. Currently, The Association is funding one study using embryonic stem cells (ESC), and the stem cell line was established many years ago under ethical guidelines set by the National Institute of Neurological Disorders and Stroke (NINDS); this research is funded by one specific donor, who is committed to this area of research. In fact, donors may stipulate that their funds not be invested in this study or any particular type of research.

Many labs have replaced ESCs with induced pluripotent stem cells (iPS cells). These iPS cells begin as adult human skin cells but are then reprogrammed to become stem cells, which are then ready to become other cells types.

Click here to learn more about stem cell research.

Does The ALS Association support animal testing?
Significant advances have been made in ALS and other neurological disorders such as Alzheimer's Disease and Parkinson's Disease using model systems such as rodents, flies and worms to better understand disease mechanisms and to develop therapies. With advances in technology made possible through research funding from The ALS Association, different approaches to minimize the use of these model systems are being developed. Similar to organizations globally, The ALS Association supports laboratories and scientists that strictly adhere to the guidelines provided by the National Institutes of Health. The Association is committed to honoring donor intent. If a donor is not comfortable with a specific type of research, he or she can stipulate that their dollars not be invested in that particular area.

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Donations

How do I donate?
Visit http://bit.ly/IBCDonate to make an online donation. Or, you can mail a check made out to The ALS Association Gift Processing Center, 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. We have a check box on our online donation form where you can specifically check research. 100 percent of your donation will be used to support ALS research with no overhead or administrative fees taken out. You may also include those instructions on your donation form if you mail a check.

Can I restrict my donation from being used on any type of research I don’t agree with, like testing on animals and/or embryonic stem cell research?
Yes, there is a “notes” space on the online and mail donation form where you can make this designation, which will we honor implicitly. You can also make this designation over the phone.

What if I already gave a donation and want to restrict it in a particular way?
You can email donations@alsa-national.org and provide details of your donation (name, date, etc.) and we will make sure to honor how you would like your donation to be used. Our email/call volume is high right now so if you have trouble getting through, feel free to wait as there is no deadline to address your restriction.

Can I direct my donation to stay with my local chapter?
Yes. If you would like your donation to stay with your local chapter, please make the donation on your chapter’s website. You can find your local chapter here.

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General

How will The ALS Association spend the unprecedented amount of money it has received?
The ALS Association looks forward to funding its present mission-priorities of research, care services and advocacy while also considering new projects to move the needle on finding treatments and a cure for the disease. We want to be strategic in our decision making in order to be good stewards of these donated dollars. When people look back on the Ice Bucket Challenge it will be seen as a real game-changer for this cause. We remain committed to communicating with our donors and public about future plans to spend this huge influx of support.

These funds will directly impact the lives of people living with ALS whether through research, care services or advocacy. Our vision is to create a world without ALS and these new funds allow us to advance research towards this goal while continuing to support those living with ALS and their families.

What percentage of the overall donations will be restricted to research?
We are thrilled with what this level of giving could mean for moving forward research into finding treatments and a cure for ALS. However, at this time, we cannot project what the percentage of donations will go towards research until we have a solid plan in place. Be assured that all donations that we received restricted to research will be used for only for ALS research.

Why is The ALS Association encouraging people to take the Ice Bucket Challenge when many areas out west are in a drought?
We share your concerns which is why we have been encouraging people interested in the Ice Bucket Challenge to make a donation or if they are going to do the Challenge to repurpose the water used. In fact, this language is clearly stated on our website here: www.alsa.org/icebucketchallenge. We were as surprised as you may have been that the challenge caught on as it did with the public. It has such humble beginnings, having been created by people living with ALS and their families as a way to raise awareness, in essence give a “wake up” call to everyone about ALS. We will continue to encourage donations or water repurposing until the Ice Bucket Challenge abates.

Did The ALS Association take steps to trademark Ice Bucket Challenge?
The ALS Association filed for these trademarks in good faith as a measure to protect the Ice Bucket Challenge from misuse after consulting with the families who initiated the challenge this summer. However, we understand the public’s concern and are withdrawing the trademark applications. We appreciate the generosity and enthusiasm of everyone who has taken the challenge and donated to ALS charities.

Are you aware of “phishing” scams around the Ice Bucket Challenge?
Yes, and we are taking steps to notify the appropriate authorities. While not widespread, we have received notification from individuals who received “phishing” emails that appear to be fraudulent. The emails provide a password and link for the recipient to click on in attempt to gather personal information. The emails were sent from an unknown address and contain images/text obtained from legitimate emails and our website. If you feel you have received a fraudulent email, please contact us and forward a copy of the email to inquiries@alsa-national.org.

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Other

Who started the challenge?
The Ice Bucket Challenge existed in the sporting world and has been used with other causes in the past, but it was people impacted by the disease who really made things go viral for ALS in mid-July. They include Jeanette and Anthony Senerchia, Pat Quinn, and Pete Frates and his family. Their commitment to this cause has inspired the nation.

Is there an end date for the challenge?
No. The Ice Bucket Challenge started organically by individuals with the disease. So as long as people keep participating, the challenge will continue.

What resources are available in my area to help people living with ALS?
The ALS Association has 38 Chapters serving the United States. Click here to find a chapter nearest you and they would be happy to assist you. An additional resource is the National ALS Registry, the single largest ALS research project ever, which is working to help identify the cause of ALS, fund research and connect patients to clinical trials. Learn more at www.cdc.gov/als.

The ALS Association is a member of ALS/MND International Alliance, if you do not live in the United States, please visit their website to find an organization near you.

I want to get involved in The ALS Association. What can I do?
There are many ways to become involved in The ALS Association:

  • Connect & become a volunteer with your local The ALS Association chapter by visiting here.
  • Sign up to become an ALS Advocate so you receive important updates and action alerts from The ALS Association.
  • Create a Walk To Defeat ALS team here.
  • Share information about the National ALS Registry, which is working to identify the cause of ALS; learn more at www.cdc.gov/als.

What is the National ALS Registry?
The Association championed the National ALS Registry, which was launched in October 2010 by the federal Agency for Toxic Substance and Disease Registry (ATSDR).  The National ALS Registry, which serves as a research engine, is helping to advance the search for the cause and treatment of ALS through risk factory surveys, connecting people living with ALS to clinical trials and studies, and funding independent research projects. More information can be found at www.cdc.gov/als.

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