To be clear: No, I did not dump a bucket of ice water on myself and posted a video of it on a social media platform. Yes, I generally donate for neurodegenerative diseases as ALS or Parkinson. And finally a big YES, I fully support such campaigns like the ALS Ice Bucket Challenge, because they impact the awareness for such diseases and finance the research, every Euro counts here! BUT: it’s not only about fun. How many participants really donate and pick their credit card instead of only posting a funny video? It looks like that more participants are supportive, since the launch of the campaign over $75 million have been donated (source: ALSA).
What is ALS?
Before we start and we dive into the ALS Ice Bucket Challenge some facts about ALS. Amyotrophic Lateral Sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. Like Parkinson is ALS a neurodegenerative disease, Parkinson is a better know disease. Both diseases have a massive impact on your body movement. In the USA 30’000 people suffer from ALS and 1 mio people from Parkinson. This also reflects the 2013 donations, for ALS $39 million and for Parkinson $135 million. In Switzerland nearly 700 people fight with ALS compared to 15’000 people fighting with Parkinson. Other facts on the Website of the ALS Association and the Swiss Parkinson Association.
How it all started?
On July 15 the golfer Charles Kennedy was nominated by his friend to dump a bucket of ice on his head and to share this video with others. Because his cousin died on ALS he made more out of it, donated $100 to the ALS Association (ASLA) and nominated three more people. With the nomination of the former baseball player Pete Frates, also an ALS patient, the viral campaign started first in the USA and finally on a global level. All the details on the website of The Telegraph.
What about the viral effect?
The figures are impressive. On Facebook over 2.4 million posted videos, the amount doubled within 5 days (August 13 – 18) from 1.2 mio (source: Time). It is a heavy discussed topic by over 28 million Facebook members (likes, shares, comments). Same picture on many other social media platforms: Twitter 17 mio mentions (tweets, retweets etc.), 180’000 videos on Youtube, 30’000 blog entries, 54’000 forum entries, 65’000 mentions on online news platforms (source: Sysomos). Twitter details in the following graphic (July 15 to August 25):
Media impact on Twitter – July 15 to August 25, 2014
What about the donations of the participants?
The basic idea is to donate 100$ for ALS if you do not accept the challenge and to donate 10$ if you accept it. Because of the viral effect and the involvement of all the friends, followers and readers of the participants, additional donations should be generated. If we just calculate with the 2.4 million videos on Facebook, with 10$ by each participant, a total of $24 million should be collected. Latest figures show that more people than expected are donating, by August 24 a total of $75 million has been reached with a total of 1.7 million single persons donating (existing and new ones). These figures only include the USA, donations to local/regional ALS organizations are out of scope. From a subjective point of view and in light of the additionally generated media contacts and the reached audience there could be more donations. It’s hard to compare theses donations with other campaigns to donate. But here some food for thought: The disaster on 9/11 generated a total of $560 million donations to the Red Cross in the USA (source: Fortune). The tsunami catastrophe in 2004 generated in Switzerland alone a total of 227 million CHF (source: NZZ).
What happens with all the donations?
In general the ALSA can independently decide how they spend the received money. But there are some restrictions from watchdog groups like Charity Navigator or Charity Watch with clear guidelines for how non-profits should spend their donations. In 2013 ALSA spent 72% of all donations for research programs and ALS clinics, 11% for administrative costs and 16% for fundraising. There are also rules to spend the money within the same fiscal year. Not such a simple task if your budget massively increases. The ALSA will also transfer money to ALS researchers in other countries as Switzerland.
For a final conclusion a clear overview of all globally received donations would be helpful, to get a better understanding how other ALS organizations benefit from the ALS Ice Bucket Challenge too. Fundraising and demand for donations require new ways of communication to activate potential donators. If a funny video is required, it’s ok. But such viral campaigns cannot be created, they start out of nowhere, are uncontrolled and they disappear faster than expected. Right, it’s viral!
The ALS Ice Bucket Challenge has a great impact on awareness for this disease, more people discuss this topic and help to fight against it. But do not forget to really donate when you post your own Ice Bucket Challenge and why not to post an image of your individual donation, this would be creative. Mine is at the end of the article!
Some helpful links where to donate:
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