Friday, May 8, 2009

A Note from the CEO of ALS - TDI

Hi again everyone:
During this ALS Awareness Month (May) and especially over the next week or so, I expect to be more active than usual posting ALS related information vs. writing from my philosophical perspectives or about our personal experiences.

Attached is a letter from the new CEO of ALS - TDI, which, in our opinion, represents the best chance for a cure or treatment in a time frame that is going to be fast enough or streamlined enough to help Heidi or the majority of PALS (People with ALS) that are living with this disease today.

Their focus is to find a drug that is already approved by the FDA for something other than ALS that shows efficacy in treating ALS. In this way, it could be prescribed for "off label" use and would not have to undergo the whole, years long, process of testing and approval for a brand new drug as currently required by the FDA.

Donations to the "Hope for Heidi" page linked at the top of this page go directly to them and we will continue to support them through any funds generated by our other efforts including the ads on this site, future sales of my book (to be published one of these days) and the very cute fundraising efforts being undertaken by our daughters and their large plastic box for donations.

=============Begin Dr. Perrin's Letter===========

Dear Bill,
May is ALS Awareness month, and we here at ALS TDI thank you for your support, your donations and your guidance over the past year. It is only because of you that ALS TDI scientists have the tools and resources they need to get this job done as quickly as possible. It is also important that you know that we are making progress. Your funding has made possible the profiling of an extensive array of gene expression data, but more importantly that effort has led to the identification of lead candidates, which in turn we are using to create potential therapeutics.

Today, ALS TDI has dozens of exciting projects in each of its strategic pipelines; gene therapies, protein biologics, stem cells and small molecules.I was humbled to report our progress to the hundreds of people that joined our most recent Research Update on April 8th (which we broadcast live from our lab over the web). This is your lab, and it is through these types of interactions that we strengthen that bond. As I reported during that webcast, we have reason to be excited here at ALS TDI, with several potentially important findings being validated today in our lab which could drastically impact therapeutic development for ALS.

I am excited to be your new Chief Executive Officer and welcome your messages and encourage your continued involvement in our work to defeat ALS. All of us at ALS TDI believe that ALS can and will be stopped. And yes, you can help. If you have not already done so, please become involved in one of our many fundraising activities, such as the 4ALS Awareness effort which we are leading in partnership with Major League Baseball. Below is more information on how you can become part of baseball history and make a future without ALS a reality.

Thank you,
Steve Perrin,
Ph.D.Chief Executive Officer & Chief Scientific Officer
ALS Therapy Development Institute

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