Remember the ALS Ice Bucket Challenge? Wonder where the $$$ went?? #TBT

Around this time last year, all of your news and social media feeds were probably covered with people doing or talking about the ALS ice bucket challenge (Throwback Thursday to CauseScience challenges). What ever happened to the hundreds of millions raised for ALS awareness and research?? CNN.com reports this week on what at least one ALS charity, ALS Association, has done with its millions of dollars.

One summer later, the ALS Association says about 40% of the ice bucket money, $47.1 million, has been spent or budgeted toward specific purposes. In time, it says the plan is to pour all $115 million back into five main spending buckets.

Bucket #1: $77 million for ‘research’

Bucket #2: $23 million for ‘patient and community services’

Bucket #3: $10 million for ‘public and professional education’

Bucket #4: $3 million for ‘fund-raising’

Bucket #5: $2 million for ‘external processing fees’

Check out the CNN article for more of a description for each spending category, especially the research section! Overall, it is truly amazing how much money was raised, not to mention the awareness of having this tragic disease all over news, media, and social sites!

Check out this ALSA video while you’re at it!

#ALSIceBucketChallenge has raised over $88.5 million for ALSA, averaging $9 million per day!!!

ALSA

 

The ALS Association (ALSA) reports that they have raised $88.5 million from the ALS Ice Bucket Challenge. The viral marketing campaign has taken over social media, raising not only money for ALS research and care, but also awareness of the orphan disease. While ALSA is certainly the primary beneficiary of donations from the Challenge, other ALS charities have also benefitted. See previous CauseScience posts about the ALS Ice Bucket Challenge, including our videos and our take on the ‘controversy’.

As of Tuesday, August 26, The ALS Association has received $88.5 million in donations compared to $2.6 million during the same time period last year (July 29 to August 26). These donations have come from existing donors and 1.9 million new donors to The Association, which is incredibly grateful for this tremendous outpouring of support.

“We are simply awe-struck at the incredible generosity that has poured forth to help fight this disease,” said Barbara Newhouse, President and CEO of The ALS Association. “Words cannot express how grateful we are to the nearly two million people who have donated and even more than that who have likely taken the challenge. You have all made an incredible effort in the fight against this disease.” 

Just one week ago, donations totaled $22.6 million. In just seven days, donations have skyrocketed by an average of $9 million per day, now totaling $88.5 million.

Video from ESPN on Pete Frates: the man who inspired the ALS #IceBucketChallenge

Frates

from Rare.us

Meet Pete Frates, a former captain of the Boston College baseball team who contracted ALS and later inspired the movement that has everyone from your grandma to Lebron James dumping ice water on their heads. – See more at: http://rare.us/story/espn-feature-on-man-who-inspired-ice-bucket-challenge-is-a-must-see/#sthash.toXOCNeR.dpuf

Despite Naysayers, #ALS #IceBucketChallenge raises awareness… and a buttload of money #$15Million

pinarMike

If you use any form of the internet, you are certainly aware of the ALS Ice Bucket Challenge. If not, learn about it on the ALSA (Amyotrophic Lateral Sclerosis Association) website. Since the Challenge began, I have seen/read a lot of skepticism, including among many scientists, about the utility of this viral social media marketing scheme. Would it raise any money? Would it raise awareness? Is it just social media slack-tivism

Personally, I think the Ice Bucket Challenge is completely justified if only to raise awareness of ALS. ie. any resulting ‘awareness’ of ALS or biomedical research from this campaign makes it completely worth it. As an ALS researcher who constantly meets people that have no idea that ALS is Lou Gehrig’s Disease, or even what that means, makes awareness of ALS hit especially close to home. Clearly, the popularity and celebrity of the Ice Bucket Challenge prove that people are at least being exposed to the fact that ALS is a disease… and a bad one at that. This alone, makes the whole campaign worth it to me.

HOWEVER, besides raising awareness of ALS, the Ice Bucket Challenge also aimed to raise money for ALS charities. At first it was unclear if this would actually happen, and even if it did how worthwhile it would be (Check out this post from Michael Levine, where he carefully breaks down the numbers and explains how expensive biomedical research can be). Luckily for those affected by ALS and ALSA, the naysayers were wrong. ALSA reported today that it has raised over 15 million dollars since the campaign took off!!!! Compared to ~2 million dollars in the same time last year. That is incredible! Check out the ALSA website for info on how they plan to spend this money. Below is a summary of priorities from the ALSA website:

  • Funding groundbreaking research in laboratories across the globe. We presently support 98 active projects and recently announced $3.5 million in funding for 21 new projects led by the world’s top scientists. The ALS Association has championed some of the most significant discoveries to date.

  • Providing vital support and care services through our nationwide network of chapters to people with ALS and their families in the form of support groups, medical equipment, respite grants and more, all while ensuring the highest standards of multi-disciplinary care through our Certified Treatment Centers of Excellence.

  • Empowering ALS advocates to encourage their elected officials to support and advance issues important to the ALS community; and convening the largest gathering of people with ALS every year in Washington, D.C. to raise awareness of the disease and support government programs designed to help find a treatment and cure for ALS.

The viral popularity of the Ice Bucket Challenge (raising ALS awareness), and the amazing amount of money raised by ALSA, argue that this ‘marketing campaign’ was EXTREMELY successful. Although I am slightly biased in support of ALS, it would be great to see this campaign or similar campaigns for other diseases that lack the support seen for cancer etc. Hopefully, any awareness raised by the campaign for ALS will translate to awareness that biomedical research needs to be a higher priority for society!

 Check out CauseScience doing the Ice Bucket Challenge!