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ALS Ice Bucket Challenge - FAQ

Spending Dollars Wisely

Can you give me a breakdown of how each Ice Bucket donation dollar will be allocated?
Research is the top priority of The ALS Association as we look at ways to put these dollars to work in the most impactful way possible. This commitment was recently evidenced in our Oct. 2, 2014 press release when we announced an initial contribution of $21.7 million to expedite research to find treatments and a cure for the disease, $18.5 million of which was designated for four global research projects. We are wrapping up the process of meeting with key stakeholder groups to provide input into a larger spending plan, which will be voted on by our Board of Trustees in mid-October. Expediting ALS research and drug development remains a top priority and we have every expectation that the most significant dollars will be spent in this area.

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.

Has The ALS Association made plans to spend any of the $115 generated through the Ice Bucket Challenge? 
Yes, after the generous outpouring of support from people all over the globe due to this summer’s Ice Bucket Challenge, the Board of Trustees of The ALS Association has approved an initial expenditure of $21.7 million in funding to support six programs and initiatives to expedite the search for treatments and a cure for amyotrophic lateral sclerosis (ALS). The Association was able to secure an additional $12.5 million in matching donations to support key research projects bringing the total to $34.2 million. The press release on this announcement can be found here.

How much of this initial spend is being directed towards ALS research?
$18.5 million of the initial $21.7 million in funding commitment is being directed towards ALS research. 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.

What process did The Association go through to get to these decisions?
Over the last several weeks, The ALS Association’s leadership has been actively involved in meeting with key stakeholder groups to provide input into a plan to spend the $115 million in Ice Bucket Challenge donations wisely. These groups include our Board of Trustees and related committees, Board of Representatives and 38 chapter executives from across the country. On Friday, Sept. 19, Barbara Newhouse, President and CEO of The ALS Association, met with a panel of advisors of people living with ALS.

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, to gather additional ideas for each project, and to ensure the maximum relevance to future therapies. 

Who is on The ALS Association’s panel of advisors?
These individuals are people living with ALS that Barb Newhouse has met 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 of advisors directly with these individuals.

Why is providing funding to Certified Treatment Centers of Excellence so important?
Multiple studies have shown the value to a patient of attending a multidisciplinary clinic. Benefits include longer survival, increased quality of life and improved access to potential therapies. One of the requirements in achieving certification through The ALS Association is for the institution to be actively involved in ALS-related research and to provide information to people living with the disease on research opportunities outside their institution. Participation in clinical trials is essential to the research process

Are these research projects going to get treatments to people living with ALS sooner?
Getting treatments to people living with ALS is our primary focus with all these initiatives. We recognize a sense of urgency in people living with ALS. We believe the roadmap to treatments involves collaboration with other ALS organizations and with industry, university investigators, government agencies, pharmaceutical and biotech companies and other nonprofit organizations committed to the fight against ALS.

When can we expect to hear more about future spending decisions?
The full plan, which will be heavily focused on driving ALS research forward, will be voted on by the National Board of Trustees in mid-October and finalized/released in early November.

I have an opinion on how this money should be spent—who can I contact?
Please email us at inquiries@alsa-national.org to share your opinion about how the bulk of these Ice Bucket Challenge donations be spent.

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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.

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

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.

Why would a corporation need The ALS Association's help with a regulatory document?
One of the Association’s priorities is speeding development of safe and effective medications for all individuals diagnosed with ALS. The U.S. Food & Drug Administration (FDA) plays a critical role in this process as the decision-maker on whether a therapy is, in fact, sufficiently safe and effective to be provided to Americans. The Association has been engaged for some time with the FDA to make sure it is responsive to the experiences and preferences of people with ALS and their families. One critical way to inform the agency is through the development of an ALS guidance.  In most cases, a guidance such as this is initiated by the agency itself.  But the simple fact is that the agency has limited resources and would not likely do this soon enough to spur the ALS therapy development pipeline.  Nor will industry alone take on this task. Fortunately, Congress, through the recently enacted Food and Drug Administration Safety and Innovation Act (FDASIA), has provided strong encouragement and new tools for patient-focused organizations such as ours to more directly impact the agency’s understanding of the disease as it reviews new therapies. So, The Association is stepping up to fill this gap through the development of a draft guidance to submit to FDA.  We will use an approach that brings all the stakeholders across our community into this initiative.  This will be an open and transparent process with the work product made available for comment and refinement along the way. Ultimately, through collaboration with the FDA, we expect the draft guidance to lead to an official guidance from the agency that provides a much more clear and supportive regulatory pathway to deliver ALS therapies to people living with ALS.

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