A Cool New Way of Raising Funds and Awareness

Raising money to help fight a disease is tough. Trying to raise awareness about the disease can be just as tough. Doing both together is positively masochistic; an experience that is often as rewarding as dumping a bucket of ice cold water over your head.

Have you taken the ALS Ice Bucket Challenge?

Have you taken the ALS Ice Bucket Challenge?

And that’s precisely what a growing number of people around the country are doing to raise awareness about—and money for research into—Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s disease. They are dumping buckets of ice-cold water on their head.

It’s called, not surprisingly, the Ice Bucket Challenge. The idea behind it is simple. You dare someone you know to dump a bucket of ice cold water over their head within the next 24 hours or make a donation to help fight ALS. Once the person you have challenged either completes the challenge or makes a donation they then challenge other people—usually three other people—to do the same. And of course there’s nothing stopping you both dumping the water on yourself and making a donation.

The idea started out with people who had ALS and their friends and family but it has quickly spread. Celebrities such as Facebook’s Mark Zuckerberg, singer/actor Justin Timberlake, TV newsman Matt Lauer and even New Jersey Governor Chris Christie have all taken the Challenge. In fact the campaign has gone viral with videos and pictures of people taking the Challenge popping up on social media – Facebook and Instagram in particular – at a bewildering rate.

It’s more than just an opportunity to laugh at a potential Presidential candidate taking a self-inflicted cold shower it’s also raising a ton of money. The ALS Association says it raised $4 million in donations between the end of July and August 12th. That’s more than three and a half times more than it raised during the same period last year. They have also added more than 70,000 new donors to their cause.

That money goes to research into finding new treatments for ALS because right now there is no effective therapy at all. It also goes to help people living with this nasty, debilitating and ultimately deadly disease.

In a blog on the ALS website Barbara Newhouse, the President and CEO of the ALS Association said:

“We have never seen anything like this in the history of the disease. We couldn’t be more thrilled with the level of compassion, generosity and sense of humor that people are exhibiting as they take part in this impactful viral initiative.”

What I love about this is not just that it is raising awareness and funds for a truly worthwhile cause but that it also shows how a little bit of creativity can create so much more interest in a disease, and the people suffering from it, than any amount of well-meaning, more traditional attempts at education.

At the Stem Cell Agency we have worked closely with our friends in the ALS Association for many years and they do terrific work (you can read about our funding on our ALS Fact Sheet). But it’s a relatively rare condition – only affecting some 30,000 people in the U.S. at any one time – so it always struggles to get people’s attention compared to bigger diseases such as Alzheimer’s or stroke. But with this campaign they have changed that. They have taken a simple idea, a simple challenge, and used it to open people’s eyes to what they can do to help fight back against a deadly disease.

I find that really refreshing. As refreshing as a bucket of water over my own head.

Kevin McCormack

Stem cell stories that caught our eye: Willie Nelson’s contribution to muscular dystrophy, cell fate maps and funding

Here are some stem cell stories that caught our eye this past week. Some are groundbreaking science, others are of personal interest to us, and still others are just fun.

Cell fate map can show quality of cells.
The phrase “there is more than one way to skin a cat” fits much of science. It is quite true for using stem cell science to generate a needed type of adult cell to repair damaged tissue. The most traditional way, directing early stem cells, the ones called pluripotent, to mature into the desired tissue is often cumbersome and has the potential of leaving behind a few of those early cells that could cause a tumor. More recently, many teams have been starting with one type of adult tissue and reprogramming them to directly convert into a different adult tissue without passing through that potentially tumor causing state. But we have not had a good way to measure which route produces the higher quality cells—which one yield cells most like those in our body.

credit: Samantha Morris, Ph.D./Boston Children's Hospital

credit: Samantha Morris, Ph.D./Boston Children’s Hospital

Some of the biggest potential differences between cells grown in a dish and those in us, is the state of the various genetic switches that turn our genes on and off. Now, a team at Boston Children’s Hospital, the Wyss Institute at Harvard and Boston University has developed a computer algorithm to compare our natural cells to various types of cells grown in the lab.

Many in the field had hoped that the direct conversion of adult cells to other cell types would prove to be the way to go. Unfortunately, the computer program showed that those cells were not nearly as good at mimicking natural cells as cells matured from early stem cells were. However, the team suggests their system points to ways to improve direct conversion. The researchers published two paper on the system they are calling CellNet in the journal Cell August 14 and Genetic Engineering and Biotechnology News did a nice write up of the work.

Willie Nelson advances stem cells for muscular dystrophy.
Really! No, Willie is not in the lab, but he was named an honorary member of the lab and had an endowed chair held by the lab director named for him. He had performed at a concert to raise money to fund the work at UT Southwestern Medical Center in Dallas and the university decided to honor him with the named chair.

In the current paper the lab used the most trendy form of gene modification out there right now, called CRISPR. Researchers are excited about the technology because it can specifically go into our DNA and permanently cut out a mutation. Then our natural genetic machinery can go about making the correct gene. In this case they used it to cut out the error that caused Duchenne muscular dystrophy in a mouse model. After the correction, the mice grew new muscle and got stronger.

The CRISPR technology needs some refinements before it would be ready for use in humans, but the team is working on that along with many others around the country. Their goal: correct the error in patient muscle stem cells so that they can produce a lifetime supply of healthy muscle. The journal Science published their work online August 14 and the HealthCanal website picked up the university press release.

Scientists need to talk to the public. The director of the National Institutes of Health, Francis Collins, visited the University of Washington this week and delivered a message straight from my personal soapbox: Funding for research is in jeopardy and the only way it will be salvaged is for researchers to get more involved in outreach to the public. The Seattle Times quoted him as saying:

“I think it’s at a particularly crucial juncture. If there was a moment to kind of raise consciousness, this is kind of the moment to do that.”

He noted that the chances of a research proposal submitted to NIH getting funded dropped from 40 percent in 1979 to 16 percent now, saying “we’re leaving half the good science on the table.” Part of the solution he suggested was for scientists to get out to Rotary clubs, high school classrooms, and any other public speaking opportunity.

“It seems to me that we all have to spend more of our time, perhaps, as ambassadors for science literacy — trying to explain what we do and why it matters.”

Don Gibbons