Posts Tagged ‘family fun’

Meet Munzee Munday: Project A.L.S.

Team Munzee is proud to announce that our players have banded together to make a splash in support of Amyotrophic Lateral Sclerosis (ALS) research. Two weeks after Team Munzee doused themselves in ice cold water and our players virtually froze the map, we’re happy to present Project A.L.S. with a donation of $54,000. For this week’s Meet Munzee Munday we wanted to put the spotlight on Project A.L.S. so our players can see what a difference their donations can make. This great organization was happy to sit down with us to talk about their story, how they’re fighting ALS and what this donation means to their cause.

Name and Title:
Project A.L.S. President Meredith Estess

Director of Research Valerie Estess.

Where are you from?
Project A.L.S. is located out of New York City, but we work with scientists all over the world.

How did Project A.L.S. start?

We were founded in 1998, as a non-profit 501(c)3, when our sister Jenifer Estess, a 35-year-old New York theater and film producer, was diagnosed with ALS. The diagnosis kind of came from nowhere, Jenifer was a committed, single, New York working woman, no one saw this coming. We were told at the time of diagnosis to “max out her credit cards and eat junk food,” Jenifer instead committed her efforts to making a difference for people with ALS—and producing treatments and a cure.

We were a family that had a lot of love and we were desperate for an answer. Each of us came from a different business perspective, Meredith worked for fashion retail merchandising and manufacturing, Valerie was in book publishing and copy writing, and Jenifer worked in theatre and was beginning to work in film. We brought a diversity of talent and skills together for Project A.L.S. and we’re an example that each individual person can make a difference.

What is ALS?
ALS is a neuro-degenerative disease very closely related to Alzheimer’s and Parkinson’s. With ALS a particular brain cell called the motor neuron is targeted. These motor neurons are located in the brain and throughout the spinal chord and regulate every voluntary movement within our bodies, from walking and talking to sleeping and breathing. So as these motor neurons are infected by ALS, so are our abilities to function.

What makes Project A.L.S. stand out from other organizations?
What we have found is that organizations like the Muscular Dystrophy Association and the ALS Association are primarily focused on patient services, which are absolutely crucial, but my sisters and I were thinking on different lines. We wanted to know who was doing the research and identify the most promising scientific research that will lead to the first effective treatments and a cure for ALS.

Historically, ALS research was conducted by researchers working separately on various aspects of the disease. Project A.L.S. changed that approach dramatically by requiring researchers and doctors to work together, share data openly, and meet shared research milestones. Project A.L.S. recruits the world’s best scientists and doctors to work together—rationally and aggressively—toward a better understanding of the ALS disease process and, in parallel, better therapeutic strategies.

What are some of Project A.L.S.’ achievements?
There have been so many significant breakthroughs. For example, when we first started in 1998 there was one gene identified in connection to ALS and now there are 27 genes identified in playing a role. Without genetic clues, we’re just shooting in the dark, so this is tremendous. We have also developed new technology with stem cell research. We can now take a small skin sample from anyone with ALS and turn that skin cell into a motor neuron that features the specific person’s DNA. So this gives scientists the ability to look at a patient’s individual disease, understand much more about ALS and screen drugs to help prevent further harm. It may sound like something out of Star Trek, but this discovery was a very hard-won, rational scientific progression.

Where can we see some of our donation go towards?
Your money can go to a number of projects that are ongoing. Every project needs equipment and personnel and this donation will go to the needs of our ongoing research. We’re currently supporting a drive to silence mutated ALS genes, which is being pioneered by Bob Brown at the University of Massachusetts. This would be one example of a project this donation will help fund. Some of the genes we find in ALS are known as diseases of inflammation, which are also active in cancer and diabetes. Through donations like this and by investigating the process ALS goes through we can also begin to understand other diseases as well.

Team Munzee thanks all of our players for their help in raising money for an organization we think is making a difference. We’re constantly humbled by the individuals who give so much, so we in turn use our opportunities to give back as well. Munzee is nothing without its players. On behalf of Project A.L.S. and Team Munzee we thank you from the bottom of our hearts.