Last summer, more than 17 million people took the #IceBucketChallenge and subsequently helped raise more than $100 million for ALS related charities. Recently, CharityNavigator.org published a piece titled the ALS Ice Bucket Challenge to help donors, many of whom weren’t familiar with ALS, make informed giving choices as well as observations about the campaign.
Now that a year has passed since the peak of the social media phenomenon, it is time to check back in with the charities and find out how their donations were put to use.
GoodCelebrity.com is publishing the interview & response from The ALS Association National Office, as given to CharityNavigator.org, below.
How much money did your charity raise via the #IceBucketChallenge?
The ALS Association raised approximately $115 million.
What are your charity’s plans for spending that money?
The ALS Association is incredibly grateful for the tremendous outpouring of support through the ALS Ice Bucket Challenge. We are committed to spending these donations to expedite the search for treatments and a cure while providing care and support for people living with the disease. We will accomplish this through our integrated mission that includes global research, care services and public policy initiatives. We have laid out a plan on our website here with details of how we are spending the $115 million. This plan includes spending $77 million on global research; $23 million on patient and community services; $10 million on public and professional education; $3 million on fundraising; and $2 million on external processing fees that were incurred from debit and credit card transactions as well as website overages.
How much has your charity already spent?
To date, The ALS Association has announced $47.1 million (40%) on specific projects and initiatives out of a total of $115 million donated through the ALS Ice Bucket Challenge in 2014. This figure will be updated as new commitments are added in the coming weeks and months. A full list of committed projects can be found here. Note: the bulk of these commitments are for research grants that are paid out over one, two and three years.
How did you arrive at this plan?
The ALS Association’s National Board of Trustees was engaged in the development of all plans to spend the Ice Bucket Challenge funding. The Board held additional meetings last fall on the phone and in person, working together with management to determine the most strategic ways to have the biggest impact in the fight against ALS. Our President and CEO convened an ALS panel of advisors made up of people living with the disease to provide input, and The Association is honoring donor intent of the individuals who restricted their donations to research.
The ALS Association’s initial investment of funds announced in October 2014 represented projects and initiatives that the organization had wanted to fund but previously had not had the necessary budget to support. These projects included funding to support four global collaborative research initiatives, which involved input from some of the world’s top ALS scientists. This announcement also involved reestablishing a higher funding level to The Association’s Certified Treatment Centers of Excellence (from $12,500 to $25,000), and proceeding with a project to create guidance for companies to help them expedite drug development.
How did your charity spend it and what are the outcomes thus far?
A full list of projects that The ALS Association is funding can be found here. Through people’s generous contributions, The Association has been able to significantly advance ALS research to better understand the disease and to expedite potential treatments into clinical trial. Additionally, this support has enabled The Association to expand outreach into underserved communities, and increase care and support for people living with ALS through our network of 39 chapters nationwide. Stories about how The ALS Association is making an impact in local communities can be viewed here (at the bottom of the page).
As you invest the money you raised on various programs and services, have you already or do you plan to team up with any other charities to accomplish your goals?
The ALS Association has taken significant steps to collaborate with other ALS organizations. We truly value partnership at every level. In April, The Association’s President and CEO convened 18 ALS organizations together in Arlington, Virginia, to identify ways to collaborate and more efficiently expedite the search for treatments and a cure for the disease. Additionally, we are undertaking a project, working with other ALS organizations and the ALS community to develop a guidance document to help companies navigate the drug development process.
What could additional donations help your charity accomplish?
The reality is that it costs between $1 and $2 billion to develop one new drug. While $115 million is a significant amount, more funds are critically needed to finish what the ALS Ice Bucket Challenge started.
What else would you like donors to know?
- For information on the #ALSIceBucketChallenge visit here.
- For information on how The ALS Association is using dollars generated from the ALS Ice Bucket Challenge, visit here.
- View these videos to see what donors have made possible in The ALS Association’s mission areas of research, care services and advocacy.
- The Association’s financial statements, 990s and annual reports can be found here.