We are dumping AND donating. Research is a passion driven beast, and only those 100% invested in finding a cure or uncovering a cause for a particular disease can keep pushing forward in the face of frustration, setbacks and red-tape. Unfortunately, all the passion in the world can't fund a research project. Research takes money. Getting that money is hard; so, the donating part is important.
The dumping part? That's just plain fun. And genius! I am inspired by whomever it was that first had this crazy idea. While it certainly has it's critics; it's working! According to this article in the New York Times, the campaign has raised over $41 million just between June 29 and August 21. That is astounding. And amazing. And a little ridiculous. And... gives so much HOPE.
My take away from this whole thing? Often times people don't donate to causes because they think what little they could give wouldn't make a difference. Think again. Based on my FB feed, the majority of people are dumping buckets of water over their head. While most of them are still donating, it's nominal - $10 usually. Look where a bunch of $10 donations ended up! $41 million!!!
So, in the hopes that all small donations eventually add up, we are TRIPLE DONATING! We will fulfill our challenge and donate to the ALS Association and we will also donate to the Engle Laboratory at Boston Children's Hospital as well as Dr. Joanna Jen from UCLA. Maybe someday I can be as creative as the Ice Bucket person and come up with a way to raise $41 million for them, but for now our modest donation will have to do!
Dr. Engle and Dr. Jen are the researchers responsible for identifying the gene mutation in Horizontal Gaze Palsy with Progressive Scoliosis (HGPPS). Before their research, HGPPS wasn't a diagnosis. My first correspondence with both of them was via e-mail before we even had a formal diagnosis. Both responded with 24 hours and have been nothing short of amazing. They have always taken a great interest in Makenna and have treated us more as friends than patients. It's only fitting that we take a great interest in their research as well!
Here is some great information on ALS... you know, the reason we are all wet! This information is taken directly from the ALS Association web site.
Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment–"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.
To dontate to the ALS Assoication click here.
If you would like information to make a donations towards the research of Dr. Elizabeth Engle or Dr. Joanna Jen, contact me at firstname.lastname@example.org.
Now... onto the dumping!!!!
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