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awhipple

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The ALS Therapy Development Institute (ALS TDI (ALS Therapy Development Institute) :: Home) will be presenting its "ALS Research 101" seminar on Sunday, May 2nd @ 3:00pm in Chicago, IL. The seminar will be located at the Sheraton Gateway Suites right near O'Hare airport.

Dr. Steve Perrin (CEO/CSO, ALS TDI) will lead the presentation and open discussion. Topics covered are: ALS genetics, drug research, clinical trials, biologics, biomarkers, stem cells, caregiver support and more.

This is an excellent opportunity to learn firsthand about ALS TDI's plan, approach, and progress in its mission to slow/stop ALS. Please REGISTER to attend this free seminar at ALS TDI (ALS Therapy Development Institute) :: ALS 101
 
awhipple, FREE advertising is such a great thing! I find it very interesting that you have made exactly two posts-one in March of 2009 and this one and both are only to advertise for ALS TDI. Two things immediately raced through my brain. First, this reminds me of a bird that is called the Cuckoo. Here is the definition; "1 : a largely grayish-brown European bird (Cuculus canorus) that is a parasite given to laying its eggs in the nests of other birds which hatch them and rear the offspring" Secondly, did ALS TDI need a legitimate tax write off thus the seminar? I wonder if you would be willing to put in writing the expense account for this FREE seminar? That of course is being paid for with tax dollars and private donations-right?! Let's see, airline tickets, expense account for food and lodging at the Sheraton Gateway, transportation for the speaker and I am certain that he is not doing this alone, so add on his staff and their expense accounts...Who is the target audience? I find it hard to believe that the medical or scientific community would take the time to attend a free ALS 101 class. PALS and CALS do not need a ALS 101 class, we could instruct you in the upper division courses. I would love to know how many attend, in what capacity [personal or professional] and the actual dollar amount spent for the free ALS Research 101 Seminar. Personally, in my humble opinion as a CALS, this is just another shameful waste of funding and time that could better be used to actually improve the lives of our PALS. ALS organizations in Canada do FREE TELECONFERENCES-minimal expense and has the capacity to meet huge volumes of people. Oh, and has ALS TDI published their recent Financial Disclosure or did they ask for an extension?
 
Good job Indigosd!
Really, if they educated enough to make a "free presentation" on ALS treatment what about learning about free web seminars?
Erica
 
I agree, seems like a waste of time.

I changed my mind... I'll ask TDI directly about what they plan to do if they do find a cure, as I want to know, and I doubt I will get a good response here. They will either ignore or get angry and I just want an answer.
 
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They never advertise us so I don't usually advertise them. Same with PLM.

AL.
 
Tussen Takk Erica, Jodi and Al for the support. All I can say is CUCKOO! I don't know if I feel more sad or more angry...
 
So what therapies has the ALS Therapy Development Institute developed?
 
I am skeptical for so many reasons and I really don't even know what is appropriate to say here or any where about ALS TDI. They have a lot of support and a lot of people raising money for them. I just hope that if they ever do find anything, it will be shared and owned by the people who funded it... those with ALS and their families, and not a handful of partners at TDI. I don't like "private" ventures that don't work with existing organizations. I don't like the big pay cheques and I don't like how they dominate the scene with costly promotions, including these "seminars". Maybe they are doing a great thing, but so far, all they have to show for it are lab tours (apparently a very nice lab) big fundraising drives and photo ops.

One thing I wonder: if they ever do find a cure, who would benefit? Would we own the cure, or would they? Would Perrin and a handful of execs sell it to a pharma, who would in turn nail it down with patents to sell it for big $ to the people who funded the research in the first place? I think the donors should own the company, but something tells me that it doesnt really work that way. Anyway... comment away. Educate me. Please.
 
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What Barry and Jodi said!
 
Welcome to Chicago--seems like that's a lot of what I've found of the ALS help there. We get lots of literature and even appeals for donations to all the ALS organizations in Chicago, but because I can't transport Gerald to Chicago (he gets physically sick on long van trips), we've given up on the so-called support we were promised from these organizations. This sounds like more of the same.
 
That is what I thought. swi71, WELCOME to the forum family! Everyone promises that they are going to do such wonderful things for the PALS and most of the time it is just marshmallow fluff and is only for their benefit. I know what you mean about the "so-called support".
 
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.
 
awhipple, You invited us, but do not respond to our questions? SHAME ON YOU!
 
Let me respond later... I was going to, but it is too hard with the baby running around the room. PS closer than ever is still miles away
 
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I was going to say more about TDI but I changed my mind. I changed my mind because I know that in the big picture, it doesn't matter.

First I have to say that I am Canadian and our system may be different than that of the US. I know everyone in our local ALS Society office and I speak with them weekly if not more. I know Jane drives out to small communities all over the province and does everything from deliver chairs and other equipment to oversee monthly "clinics" at the local hospitals. I know, I have sat in on one with Joy.
I also speak with our Canadian ALS Society several times a week. I understand that unlike our provincial society which focuses on care and equipment, the National society also funds research.
TDI doesn't exist in Canada so I can't say much about them. I did have questions about them earlier in the year, and Mike Shannon from TDI was good in getting back to me right away. I am not convinced about the financials or about Perron but that is beside the point. The people who support TDI support a wish for a cure and believe in TDI and what they are doing, and nothing I say would change that... nor would I want it to.
Instead, I am going to give you my wish list, and this applies to TDI as well as anyone who is working toward helping those with ALS:

1) I want a database and I think that this should be a jointly funded, concerted effort that crosses borders. How can we hope to find a cure when we don't know who has it, when they got it, what they were exposed to or what sort of family history they might have with neuro diseases.

2) I want access to care. People are hit hard and fast with this disease, and because of the physical toll, most are forced to shell out their entire life savings for equipment they may use for a few months or a few years. I have heard from people on this forum and elsewhere who have lost their significant others or who do not have a family to support them and are alone. I have read about long and ridiculous trips to doctors only to be met by stairs and misunderstanding and the whole thing is wrong.


3) I want to see associations and orgs. work together, at least in these two areas, and dedicate some portion of their efforts and funds toward it. I know that TDI is focused on research, but if we do not put some effort into what is happening today, how can we guarantee that anything will come of it for tomorrow?

I don't think we can afford to support a single hero as this is a team effort... and I also don't think we can put all of our efforts in one basket, be that research or personal care. There are many baskets and we are suppose to be working together on this. If TDI starts cross borders and allocate some funds on data as well as care, then they get my vote. Until then, I will continue to support those who are multinational and who diversify.
 
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