A Guest Blog Post by Mark Freifeld
First the laugh:
A guy dies and finds himself in Heaven standing in a line of people waiting to pass through the Pearly Gates. As he’s waiting in line, he looks around and notices off in the distance an old man with a white beard, a white lab coat, and a stethoscope around his neck pacing back and forth and looks to be in deep thought. Curious, the guy asks an angel walking past the line, “Excuse me. Who’s that old man over there in the white lab coat.” The angel looks over at the old man, smiles, and replies, “Oh, that’s God…he thinks he’s a doctor!”
Now the mission:
When I was diagnosed with multiple system atrophy (MSA), one of the most difficult pieces of information to hear was that modern medicine had nothing to offer: no cure, no treatment, no hope. How could that be? As I communicated with experts and learned about the disease, I learned the cause is unknown and complex and like other neurodegenerative diseases, protein misfolding seems to be the culprit. The question is what are the triggers and root cause of protein misfolding and currently the answer lies beyond today’s scientific knowledge.
I dream of the day when multiple system atrophy will be a disease of the past. My mission is to do what I can to help in that effort.
One thing that is definitely known is that medical discovery requires money. Moreover, since MSA is a rare disease and since rare disease does not provide the profit opportunity for the pharmaceutical industry, finding a cure for MSA is dependent on federal funding of National Institute of Health (NIH) research grants and private donations. NIH funding has historically been the major financial resource for rare disease medical research and discovery. This funding has been cut significantly in the current financial sequester; for example, NIH has had to cut funding for 700 research grants (http://www.nih.gov/news/health/jun2013/nih-03.htm).
There’s not much power in one MSA patient, but there is power in many MSA patients. Too few people, especially our elected officials, know about MSA and its affect and impact on the patient and their family.
Cutting NIH funding is not acceptable and costs lives. No one cares more about a finding cure than we do.
I encourage you to join me in writing to your Congressman and Senator encouraging them to support MSA research and NIH funding. To save you time, I’ve attached a copy of my letter to my elected representatives that you’re welcome to copy or customize. Also, here’s a link where you can put in your zip code and find out the contact information for your elected official (http://whoismyrepresentative.com). Note: Using this link, it took me 15 minutes to connect to 4 of my elected representative’s website and email them my letter. Let your voice be heard.
Thanks for your support.