ALS TDF will host its first open conference call next Tuesday, September 26th beginning at 7 PM EDT/4 PM PDT. The conference call includes a short presentation by Jamie Heywood (d'Arbeloff Founding Director and CEO of ALS TDF), Sean Scott (VP of Drug Development at ALS TDF) and me (
http://www.als.net/aboutus/people.asp).
The call will be open to members of the forum community and will be accessed via a conference host. To find out more information, including receiving the call in number and unique PIN, please email Jessica Hartley at
jhartley@als.net .
A web page presentation will be posted on our web site prior to the call and the link to it will be posted here.
We invite participants to prepare questions - questions that have already been sent in are listed in the response below. Please post your questions for the Conference Call as responses to this thread - either in advance of the call or as they arise during the call. Note that we may not be able to answer all questions but will try to incorporate them in our discussions as possible.
I look forward to hearing from you,
John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation
Some of the Questions to date for our conference call:
1) I want to know if there is one area where you see positive results, that could mean, something in the near term, that could help patients? Define "near term".
2) It would be helpful to hear your comments on the drugs that are enrolling for clinical trials. It is difficult to know which drug seems like the best "bet" and with the fewest negative side effects.
3) I would appreciate the sharing of information, about anything that is working well, for ALS patients, including things that might be helping Stephen Heywood. Every single patient has to "reinvent the wheel", pretty much on his own. Breathing, patient comfort, sleeping, med's that increase comfort, communication, etc. Clinic's are providing band-aids, they are not providing hope.
4) Any results from Ray Onder's diaphragm stimulator, Phase 1 trial? Where is the Phase 2 going to be held? What is the cost?
1) Where do we stand with TNF-alpha (tumor necrosis factor) application in ALS?
2) Any more follow up with VEGF ( Vascular Endothelial Growth Factor)? It is being used for treatment in some cancers.
3) If a drug is believed to be efficacious how do you take it to a human clinical trial?
http://www.als.net/forum/topic.asp?TOPIC_ID=911