I would like to share my feelings here. (If you are skeptical due to my low number of posts, it is b/c I changed my username and in the past only lurked here. I changed my username as I am became better known as Kick ALS, (Michele Dupree)...
This thread was started by Amy Whipple. I've had the pleasure of meeting her and she got involved with TDI after her Aunt died of ALS. She was so devastated by witnessing ALS firsthand, she has never turned back. And I have to say, every person who works at TDI, personally has been affected by either the loss of a family member or through their close relationships with the patients they are attempting to help. Not to mention, the loss of their President, Sean Scott and of course, Stephen Heywood, to which TDI was born. I just wanted to say this b/c of some of your comments- but I understand, if you haven't spoken with them, then you might not understand how deeply they care about finding a drug NOW!
If you post a comment or question here I doubt you will get a response from them- but I personally know that you can get any of their contact info./ e-mail addresses right off their website and they will gladly answer your questions.
ALS TDI (ALS Therapy Development Institute) :: Home. I know this because I have never hesitated to call them up with any questions or concerns and they are always available to talk with me. (good luck finding another org. which will get on the phone with you.)
As for what TDI will do when they find a drug- (this question I have asked) - is many things. First, remember they are a NON-Profit organization. They also do not believe that it will be solely one drug which provides a treatment or cure. Any profits which could be reaped from a drug discovery would be immediately put back into their research. As with other diseases, it is often several (or a cocktail) of drugs which eventually manage such a complex disease. Their website also has a research pipeline posted so you can see every drug they have tested and follow those which they are monitoring. Their past research has focused on testing drugs which are already available on the market to see if they provide any efficacy. They currently have several in the pipeline which seem interesting & exciting and by following their work, I know they are working like crazy trying to find a company to help them produce enough of a drug to bring it to trial. They know they will need several drugs and this includes even if stem cells prove successful. Scientists, Doctors, researchers know it is not going to be one thing which answers the problem here.
When it comes to salaries, etc... That's a hard one to defend. I would hope that if you are furious about the salaries being taken, that you look at other organizations as well and compare apples to apples. For example- when you posted the salary of TDI's Chief Scientific Officer/CEO, we are talking about a
Scientist & someone who has worked for big pharmaceutical companies and probably left a lucrative position to join a non-profit.... You have to look at what someone would be making in the field that they excel in. He also doesn't exactly work 40 hours a week. Compare these salaries to those who work at other org's and look at what knowledge they bring to the table when it comes to actually finding a treatment or cure. NOT just in fundraising or lobbying. And perhaps most importantly, (and I know a lot about this because I am always researching)- is the percentage they put towards research. I believe 86% of their total went into their lab. Again, compare this.
http://www.alsa.org/files/pdf/report_09.pdf
And last but not least, the origin of this thread was to invite people to Washington for a 101. This is what TDI has named their open door forum where people can sit right in front of TDI and ask anything they ever wanted to know and learn about current research, in layman's terms... The reason they are having this 'seminar' is because they were asked to by many of the patients who travel each year for National Advocacy Day. It was the thought and hope of many (including me) that The ALS Association would invite all of the top ALS Organizations to present at NATIONAL Advocacy Day. TDI, MDA, Project ALS, etc... would all be together- scientists, advocates, Doctors, researchers... (instead of them all having their private conferences) They could all come together to be with the Pals and families. But ALSA does not want that. I am sure TDI would not be having their own seminar if ALSA would have allowed them a break-out session during the conference. It was the patients and families who want to see TDI there and they are built by and for patients. Pcut.org is doing the same thing during advocacy as they were not 'invited' to present at the conference- setting up their own time for a 'seminar'. Last year we did this with Dr. Benatar of Emory University so we could have a discussion on Familial ALS Studies & trials. We literally had our own 'seminar' by finding a corner and setting up chairs as ALSA did not include such an important & informative meeting. THIS year, ALSA has invited Dr. Benatar.
I can understand everyone's anger and I am right there with you. I spend everyday with my best friend who is living in ALS hell. I am pissed, devastated and I want more now! But some things must be thought of in perspective. TDI has not portrayed themselves to offer patient support, yet they have an ALS Nurse available if anyone needs advice. They will gladly welcome splitting fundraisers to support an organization who is dedicated to helping patients (as I myself have done and will continue to) and they truly care- as I have seen them all with tears in their eyes in discussing this horror.
I believe it is almost monthly that they host free webinars (teleconferences) & they are also archived on their website or you can sign up for the upcoming ones as well.
No one has a cure yet, but the chance of a treatment coming out of the TDI Lab seems closer than ever and I would hope some of you would at least try opening a conversation with any of the team. If you don't know who you'd like to connect with, send me a message and I can tell you who lives near your area . After that, you can come back and post your opinions again. I hope you do, as every organization should be held accountable by the people they are trying to serve & if you have a better idea or you want your voice heard- then step outside posting just your feelings & turn them into action.
Thanks for reading-
~Michele
ps- I am sure if anyone asked TDI to post a link to this forum they would, so I will call them today to ask.