Deconstructing a PR Case:The ALS Ice Bucket Challenge

By: Victoria G. Johnson

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BackgroundThe ALS Association is an American non-profit organization that leads the way in research, care services, public education, and public policy on issues related to Amyotrophic Lateral Sclerosis (ALS). The organization is broken up into a nationwide network of chapters each servicing a particular geographic area of the U.S. all working under the umbrella of a national chapter.

The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure by:Leading the way in global research Providing assistance for people with ALSCoordinating multidisciplinary care through certified clinical care centersFostering government partnerships1

1www.ALSA.org/about-us/

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Background National Headquarters: 1275 K Street NW, Suite 250

Washington, DC 20005 Motto: Create a World without ALS Focus: Research, Patient Aid President and CEO: Barbara Newhouse Revenue: 138 million (2015) Website: www.ALSA.org

Facts about the ALS Association:Has committed more than $100 million to find treatments and a cure for ALS. Their research has helped increase the number of scientists working on ALS, advanced new discoveries and treatments.Since 1998, The Association has funded 22 clinical management research projects representing a total commitment of $750,000.ALS Association advocacy efforts have led to federal funding for peer reviewed medical research (2003) and shorter waiting periods for Medicare patients with ALS (2001).

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Business Goal/MissionMISSION

Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them

with compassionate care and support.

Mission Priorities•Raise the level of awareness of The ALS Association as the leading voice and most trusted source of information about Lou Gehrig’s Disease.•Lead, direct and/or collaborate on global research to understand the disease, develop treatments and ultimately find a cure.•Provide every person with ALS and their families access to high quality, consistent and compassionate support services.•Advance a nationwide advocacy program that increases funding for ALS research, improves patient services and empowers the entire ALS community.•Function as one organization with unity of purpose.•Operate within a business model designed to ensure stability and promote financial strength.

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Statement of Problem/OpportunityAmyotrophic lateral sclerosis (ALS), also known motor neuron disease (MND), is a

specific disease that causes the death of neurons that control voluntary muscles.

The cause is not known in 90% to 95% of cases. No cure for ALS is known. The only drug treatment for the disease approved by the FDA prolongs survival by several months only. $2 billion is the estimated cost to develop a drug to slow or stop the progression of ALS.The disease is not well publicized and many people have not heard of it.

Because so little is known about the disease and no effective treatment or cure have been invented as of today it is important for scientists to continue the research on ALS in order

to develop new and more effective treatments.

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Statement of Problem/OpportunityAmyotrophic lateral sclerosis (ALS), also known motor neuron disease (MND), is a

specific disease that causes the death of neurons that control voluntary muscles.

The cause is not known in 90% to 95% of cases. No cure for ALS is known. The only drug treatment for the disease approved by the FDA prolongs survival by several months only. $2 billion is the estimated cost to develop a drug to slow or stop the progression of ALS.The disease is not well publicized and many people have not heard of it.

Because so little is known about the disease and no effective treatment or cure have been invented as of today it is important for scientists to continue the research on ALS in order

to develop new and more effective treatments.

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Research

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S.W.O.T.Strengths

•Excellent cause•Well-known and respected company•Well-developed website with comprehensive information describing the disease and listing the company information•The company is linked to all social media platforms•Website has Spanish links and information in Spanish•Presence of local chapters

Opportunities•Attract the younger following by wider exposure via social media platforms•Use Facebook due to its high popularity and ease of access to create awareness•Bring recognition to the Association and, therefore create awareness, by displaying the logo of the company via media outlets, including social media platforms, online forums, print media, television

Weaknesses•Not a well-known disease•Lack of recognized “brand” •Lack of local chapters in rural areas and smaller towns, all chapters are all located within the U.S. and only in major cities•Research of effective treatment or cure can take years, no guaranteed time frame for donors•Lack of funding

Threats•Cost of the R&D for cure and effective treatments •FDA approval will be required for any drug developed, which will require additional funding and time•Competing nonprofit organizations•Lack of public knowledge in regards to the disease•Length of time required for R&D

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Strategic Implications• Over 30,000 Americans suffer from this disease at any given time• Most people that develop ALS are between ages of 40 and 70, with an

average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties

• Disease affect men and women. ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries and can affect anyone

• Military veterans and certain athletes are approximately twice as likely to develop ALS

• Charity angle. The external environment consisting of public that is, in general, empathetic and like helping a worthy cause. By taking part, people will believe that they are making a difference

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Communication Goal• To promote awareness of

the disease amyotrophic lateral sclerosis (ALS) among as many people as possible

• Create a sense of urgency in researching the disease that did not exist before

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Communication Objective• Encourage as many

donations as possible to generate funding for research and help existing patients with ALS

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Key Audiences• Primary: People who are

interested in donating funds to ALS research

• Secondary: People who are not aware of ALS Association or the ALS disease

• Adults, men and women, of all age groups

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Key Messages• Amyotrophic lateral

sclerosis (ALS) is a neurodegenerative disorder

• Funding is needed to support R&D for cure and new treatments along with patient, community services as well as public and professional

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Strategies• Leverage competitive tension and a

natural human urge to goad• Communicate tongue-in-cheek and fun• Make it “personal” by using the people

that have ALS, their friends, and family• Keep it simple and make it entertaining

for potential donors • Educate new donors about the

difference their money will make to encourage donations

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Tactics• Use the existing “Ice Bucket Challenge”, tie it directly to ALS and encourage

donations towards ALS cause• Incorporate wide use of online and social media channels: YouTube, Facebook,

Twitter, ALS Association Website• Explicitly state the rules of the participation in the ice bucket challenge: dump

bucket of water on your head, record the process, post on social media, nominate and challenge 3 more people to do the same. Explicitly state via online outlets that participation in the water dumping challenge is not mandatory, one can donate bypassing the recording of the video or doing the challenge

• Create exposure by bringing in celebrities and professional athletes participating in the video challenge

• Encourage participants to spread the message on social media and, in the real world, by word-of-mouth by soliciting celebrity involvement

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Evaluation

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Evaluation

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Timeline• Employ a deadline to

complete the challenge - time response to the challenge within 24 hours.

• The campaign is seasonal and to be carried out mid-summer when the weather is acceptable in most parts of the U.S. – the campaign took place in August of 2014.

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BudgetCost to initiate the campaign to go viral via Social Media outlets included:•Cell phone camera•A bucket•Ice•Water •Access to social media for videos posting