After nearly 1 full year of nonstop surfing on the Internet for answers & hope, I've seen a lot of encouraging scientific breakthroughs, yet none have even come close to delivering a basic and or effective treatment for ALS. At this point in time, there is absolutely nothing out there in the form of treatment or cure, therefore me and 35,000 other Americans afflicted with this devastating terminal disease, wait & hope that our outcomes won't be the same as the hundreds of thousands that have passed before us.
But let me ask you one question, when has waiting and hoping ever accomplish much-? What I'm trying to say is, I have always believed in going down swinging - To a certain extent, because ALS is an orphan disease, the responsibility for turning "if into "when" lies on our shoulders. But how do we fight you say -? -- By bringing about awareness anyway possible and subsequently turning that awareness into research money.
What are some of the biggest obstacles to finding effective treatments and or a cure for ALS?
There are many but the biggest obstacle is the fact that ALS is considered an orphan disease. What does that mean-? -- Because ALS strikes relatively few people, as compared to a disease such as heart disease, cancer, diabetes, HIV, Alzheimer’s, etc., large pharmaceutical companies are unwilling to invest their considerable research dollars in a disease that has only seven thousand new cases annually. Better said, pharmaceutical companies can’t be bothered to develop therapeutic strategies for ALS, which is perceived as an unprofitable market.
I know one thing for sure, with the arrival of ALS TDI/Augie's Quest, our time has finally come, our movement is real, and real change has finally come to the ALS community. ALS TDI is cutting edge research; they run it like a business, with businesslike goals and businesslike efficiency. It's funded with contributions from Augie and from others. To date, we have raised - get this - more than $14 million.
At this moment in history, the stakes are too high and the challenges too great to continue to put ALS (Lou Gehrig's disease) on the back burner. The old way of doing things as it relates to ALS research, must come to an end. We cannot continue to play this same old ALS game with the same old ALS players/methods, and expect different results.
There will be those who say it cannot be done. But I guarantee you that, when ALS TDI /Augie's Quest, finally make their breakthrough announcement, these naysayers will be the first in line, and not feel an ounce of guilt that they did not help the cause it in the way shape or form. I have always believed that when ordinary people come together we can still do extraordinary things. Get off that couch, quit being a spectator, get the word out -- ALS TDI is the real deal.
Sharing this message, is one more way to help start a conversation with your friends, family, coworkers, and anyone else who you think might be concerned
Right now all my close friends and family members are making phone calls, emailing friends, and doing everything they possibly can to create awareness, raise money, and help me win my battle with this Goliath.
This is our moment -- please do what you can.
Thank you so much,
Eddie
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http://www.als.net/ffc/familyPage.asp?familyID=409
Dear friends and family,
Please review/double click the Hyperlink above, it is my very own official ALSTDI friends and family web site (updated).
My hope is that, after you read our story, you will understand the urgency of this cause (it really is a race against time for myself & ALL people afflicted with this killer disease). Please help us out by forwarding this e-mail/web site link) on to all of your close friends and family members.
I believe, that with your help, we will generate a better understanding of ALS (Lou Gehrig's disease), which will subsequently generate the donations that are desperately needed for (ALSTDI) to accomplish their mission, which is finding an effective treatment and or cure for this very fast moving TERMINAL disease.
Eddie