A “Rare” Perspective on the #IceBucketChallenge

Becky Mayes is the Chapter Manager for Uplifting Athletes, a national nonprofit which aligns college football with rare diseases.

Every person has their opinion about the virality of the #IceBucketChallenge that has seen recent success raising awareness of and research funds for ALS.

I have seen a wide range of support, indifference, and opposition to this movement, which has tens of thousands of people participating and counting.

Working for a nonprofit organization that focuses its efforts in the rare disease community, I am in awe of the impact of this campaign.

Now let me explain why I’m a fan of the #IceBucketChallenge.

It starts with an understanding the general landscape of the rare disease community. There are currently more than 7,000 rare diseases that affect 30 Million Americans (about 1 in 10 people). A disease is considered rare if it affects fewer than 200,000 Americans.

Precious few drug companies conduct research on rare diseases since it is difficult to recover the costs of developing treatments for small, geographically dispersed populations. Currently, 95 percent of rare diseases are without an FDA approved treatment.

And any treatment discovered for any disease, rare or not, takes years and year of research to understand the pathology and origin of the disease in order to create an effective treatment option. Not a quick or easy undertaking.

ALS, or Lou Gerhig’s Disease, is a rare disease since it currently affects around 30,000 Americans. It is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

There is no cure so everyone diagnosed with ALS succumbs to the disease. There are currently a few treatment options to help slow down the progression of the disease and to help manage symptoms.

But there is no cure. And that brings me to the importance of hope.

With the daunting uphill battle that accompanies every rare disease diagnosis, it becomes extremely important to create a network of support. There really is limited impact an individual can have in the research realm since it literally takes millions and millions of dollars to fund a research project.

However, individuals can have a monumental impact just by “being there” for someone suffering from a rare disease. One of the common things I hear from families with a member battling a rare disease is that they feel as though they do not have a voice and that they feel isolated.

It is really amazing how much the human spirit can be lifted by rallying around individuals who need that emotional crutch during especially difficult times.

Something as simple as uploading a video of support – via the #IceBucketChallenge in this instance – can be a much needed boost. In order to fully battle a disease, you need emotional support and you need hope.

With the thousands of video uploads from celebrities and professional sports teams, you would be hard pressed to find anyone battling ALS that feels alone in their fight these days.

So what is the key to this #IceBucketChallenge?

For every nonprofit organization, there are two main pillars: awareness and fundraising. The challenge has accomplished both of these with flying colors. Let’s talk awareness.

Did you know what ALS was before the #IceBucketChallenge? Probably. Did you know how many people it impacted or that it had no cure? Maybe. Does everyone who participated in the challenge actually know more about ALS than before they did it? Probably not.

But I guarantee you what this challenge has done is informed thousands of people about the disease who otherwise would have never known. That itself is a huge success.

The other critical part of this challenge is the fundraising piece. According to ALSA, donations have spiked significantly. Last year during this time, donations were running at about $1.7 million.

This year, it’s a whopping $13.3 million with more than 260,000 new donors in their database that will be provided an opportunity to stay connected to the organization. Many won’t, but opportunity is everything.

This campaign is all about options, opportunity and involvement. A donation wasn’t required, rather encouraged. And since charitable donations are personal in nature, many of the participants in the #IceBucketChallenge probably did not or do not have ALSA on their list of favorite organizations but that does not mean they aren’t still able to be a part without opening their wallet.

One of the biggest demographics to take on this campaign full throttle is the millennials. Because of this generations overwhelming presence on social media, it should be no surprise the #IceBucketChallenge has been a smash for them.

This demographic –  many in their 20’s or early 30’s – do not yet have a disposable income or savings accounts. They do, though, want to help and be part of social movements by using their hands.

For most nonprofit organizations, trying to figure out how to mobilize this base to support an organization has proven to be extremely challenging. Most organizations can’t invite people to plant trees or clean up a local park, so being able to find an activity for them to do that positively impacts the organization and helps execute its mission tends to be difficult.

The #IceBucketChallenge is brilliant in the fact that it allows everyone who has ice, water, and a bucket to participate. It’s free, easy, and not time consuming. There really isn’t much else you need to say to a millennial for them to participate in a great cause.

To all ALS-focused non-profit organizations, I say thank you and congratulations on taking the #IceBucketChallenge campaign to a more cohesive and united front that brought together supporters across the country to bring awareness (and raise funds!) for ALS.

We truly appreciate your efforts and want to thank everyone who has participated in the #IceBucketChallenge. You have made a positive impact and helped to create a stronger community in the fight against rare diseases, including ALS.

Together…We Are…Stronger!


Now you can view us participating in the #IceBucketChallenge and asking our pharmaceutical research partners Shire, PhRMA and GSK to join the campaign.

One thought on “A “Rare” Perspective on the #IceBucketChallenge

  1. You are awesome 🙂

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