TIME health

The Real Ice Bucket Challenge

What’s harder than dumping freezing water on your head? Repeating this kind of success

One of the most viral philanthropic social-media campaigns in history has reached our family too. We were about to board an international flight when both of my children were called out by their friends on Facebook to accept the Ice Bucket Challenge for amyotrophic lateral sclerosis (ALS), the deadly neurological condition commonly known as Lou Gehrig’s disease.

My kids are no strangers to ALS. Our neighbor has it, and my daughter is a student at Boston College, the alma mater of Pete Frates, the young man whose fight inspired the challenge. But I don’t recall talking about ALS as a family before, and I doubt either of my kids had ever discussed it with their friends. Like most other rare diseases, ALS doesn’t often find itself in the spotlight.

At 30,000 ft., we talked for the first time about the devastation ALS brings and what is being done about it. We watched countless videos of friends who had stepped up to the Ice Bucket Challenge. And within hours of landing, they too had dumped icy water–and uploaded the proof. We watched together in amazement as, within days, everyone from George W. Bush to Taylor Swift got soaked in the name of charity.

So fun! So creative! So … effective. Why didn’t the Multiple Myeloma Research Foundation (MMRF), the cancer-research organization I started when I was diagnosed with the disease, think up something like this? my kids asked. I had no answer, only the wish that we had.

So far, the social-media craze has raised a whopping $94.3 million for the ALS Association since the end of July. That’s up from $2.7 million in the same period last year. And that’s just one of many ALS-focused organizations to have seen such a windfall.

As brilliantly simple as the Ice Bucket Challenge is, its phenomenal success is making many of us think hard about new ways to raise awareness and dollars.

The efficiency of the campaign, for one, is awe-inspiring. The only overhead the ALS Association incurred was the cost and staff time of drafting and then sending a single email to 60,000 people in its database. The campaign also demonstrated the power of one or two people who care passionately about a cause. After all, the Ice Bucket Challenge wasn’t started by the ALS Association or a PR agency but by young people who wanted to support their friend with ALS.

For me, the biggest takeaway of all is the need to engage a younger generation of potential donors. A recent report showed that in 2012, 75% of 20-to-35-year-olds had donated to philanthropies the year before, and another 70% were more than willing to ask their friends and relatives to do the same. Millennial enthusiasm can make things go viral, sometimes massively so. The results speak for themselves.

But now that the money has been raised, a potentially harder challenge is emerging. Many people are questioning what the ALS Association will do with such an extraordinary influx of money. In my view, the opportunities are endless.

As is the case for most rare diseases, progress in ALS research has been severely hamstrung by funding shortages. There are few treatments–none of them effective–and a cure for the disease remains elusive. The ALS community’s windfall will dramatically change that landscape. Simply put: science that was never before imaginable is now possible.

This will no doubt create a groundswell of interest in ALS research. It will attract new scientists to the field who may not otherwise have been interested in the disease but who have to follow the funding. And it will pique the interest of pharma and biotech companies, which may not otherwise have had the incentive to pursue R&D for such a relatively small patient population.

Making the most of each dollar means developing milestones for every project funded and communicating these results back to donors. Over time, this will help turn the 1.9 million new donors captured through the Ice Bucket Challenge into repeat donors.

Watching how the campaign has unfolded so far has already prompted us at the MMRF to think of new ways to more effectively raise dollars. My hope is that long after the Ice Bucket Challenge dries up, other disease-based nonprofits will be inspired by how the ALS community stewards the funds raised this summer and continues to build support for curing such a cruel disease.

Giusti is founder and executive chairman of the Multiple Myeloma Research Foundation

This appears in the September 08, 2014 issue of TIME.
TIME Cancer

Tom Brokaw’s Cancer and His Hopeful Future

Harry & Jeanette Weinberg Inter-Generational Center Tour
Kris Connor—Getty Images Tom Brokaw attends the tour of the Harry & Jeanette Weinberg Inter-Generational Center in Silver Spring, Maryland.

Time 100 honoree Kathy Giusti explains how multiple myeloma patients' expected lifespan has doubled from what it was 16 years ago

My personal JFK moment came on January 12, 1996. I will never forget that day. I remember where I was, what time it was, even the weather that morning when I was diagnosed with multiple myeloma. Unlike many patients who hear about the disease for the first time I knew too well what this incurable blood cancer was all about. Partially my knowledge came from running worldwide operations for a major pharmaceutical company. The other reason was this rare cancer also ran in my family—my grandfather had myeloma. To my amazement, I was being offered the same medicines to treat my illness that patients were taking back in the late 1950’s.

My future looked grim. I was happily married with a beautiful one year old girl and suddenly I was facing an uphill battle with an uncommon and heterogeneous cancer with virtually no modern treatments available and no drugs in the pipeline. I was told to get my affairs in order—I had three years to live, if I was lucky. Despite those odds, it wasn’t in my nature to pull the covers over my head and hide. With the help of brilliant partners, donors, friends and family we started the Multiple Myeloma Research Foundation (MMRF) with the hope of one day finding a cure.

That was 16 years ago. For decades so little progress had been made in the field of multiple myeloma. So, why now, over the past 10 years has there been so much progress, and why are we so equally as hopeful for the next 10 years to come?

The answer I believe lies in the myeloma community itself, which has worked skillfully to identify the barriers to cures and develop a plan to show patients and their families that the tiniest cancer is making the greatest stride as a result of this tight knit, integrated collaboration.

Today we work with the best scientists, pharmaceutical partners, biotech companies and academic centers in the world to facilitate progress in drug development. We remain eternally grateful for the work they do and the amazing trials of these pioneering drugs they produce so quickly. In the past decade myeloma patients have seen the FDA approve six multiple myeloma treatments, and counting – an unthinkable timeline in oncology. As a result, we have witnessed the doubling of our patient’s life span.

Our hope for the future is equally exciting due to the rapid advancement of technology in terms of genomic sequencing and the ability to store, integrate and share data in an open access world where patients have become more empowered in driving toward a cure.

We’re seeing today a more robust pipeline of treatments for the many subtypes of the disease than ever before. Treating patients with the precise combinations of treatments for their subtype is the way of the future. The world has changed since I was diagnosed and patients who once felt so alone now hold the key to the cure. The more we raise awareness, the faster cures will be found. And the acceleration of finding cures won’t take decades any more thanks to these new technologies. Now patients can play a major role in not only elevating the consciousness of the disease, but by providing their tissue, sharing data and entering new trials, they are transforming outcomes for themselves and for those future patients who have yet to be diagnosed.

Kathy Giusti is Founder and CEO of the Multiple Myeloma Research Foundation (MMRF), the leading private funder of multiple myeloma research.

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