Clinical Trials in ALS

ChatMaster (May 6, 2009 2:16:12 PM)
(This user has entered Clinical Trials in ALS)

dr-cudkowicz (May 6, 2009 2:17:07 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:17:54 PM)
Hello, Dr. Cudkowicz! You are early! We will begin in 10 minutes

ChatMaster (May 6, 2009 2:18:12 PM)
I am glad you were able to login with no problems.

donS (May 6, 2009 2:18:48 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:18:54 PM)
Welcome donS!

ChatMaster (May 6, 2009 2:19:10 PM)
The Clinical Trials in ALS chat will begin in 10 minutes

1Adam12 (May 6, 2009 2:19:27 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:20:14 PM)
Welcome 1Adam12

ChatMaster (May 6, 2009 2:20:30 PM)
The Clinical Trials in ALS chat will begin in 8 minutes

1Adam12 (May 6, 2009 2:20:34 PM)
:)

Donna G (May 6, 2009 2:22:53 PM)
(This user has entered Clinical Trials in ALS)

peterE (May 6, 2009 2:23:25 PM)
(This user has entered Clinical Trials in ALS)

anita (May 6, 2009 2:23:52 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:24:11 PM)
Welcome!

ChatMaster (May 6, 2009 2:24:18 PM)
The chat will begin in 5 minutes

Donna G (May 6, 2009 2:24:21 PM)
Hello

bivoj (May 6, 2009 2:24:36 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:25:40 PM)
The Clinical Trials in ALS chat will begin in 3 minutes

Marash (May 6, 2009 2:26:28 PM)
(This user has entered Clinical Trials in ALS)

Marash (May 6, 2009 2:26:38 PM)
Hello

ChatMaster (May 6, 2009 2:26:49 PM)
Hello! The Clinical Trials in ALS chat will begin in 4 minutes

ChatMaster (May 6, 2009 2:26:54 PM)
The Clinical Trials in ALS chat will begin in 2 minutes

ChatMaster (May 6, 2009 2:27:18 PM)
Thank you all for coming to the Clinical Trials in ALS chat!!

pete46 (May 6, 2009 2:27:27 PM)
(This user has entered Clinical Trials in ALS)

Donna G (May 6, 2009 2:27:50 PM)
will there be a transcript available after the chat

ernestina (May 6, 2009 2:28:01 PM)
(This user has entered Clinical Trials in ALS)

pete46 (May 6, 2009 2:28:20 PM)
hello all

Marash (May 6, 2009 2:28:23 PM)
Hello

Donna G (May 6, 2009 2:28:31 PM)
hello

peterE (May 6, 2009 2:28:32 PM)
Hi Pete

ChatMaster (May 6, 2009 2:28:34 PM)
Yes there will be a transcript available after the chat at www.mda.org/chat/transcripts.html

Donna G (May 6, 2009 2:28:44 PM)
thank you

ChatMaster (May 6, 2009 2:28:48 PM)
Hello everyone! Welcome to the Clinical Trials in ALS Chat.

peterE (May 6, 2009 2:29:11 PM)
thank you

ChatMaster (May 6, 2009 2:29:35 PM)
Two of the nation's most respected leaders in ALS research, clinical trials and patient care will now kick off MDA's ALS Awareness Month “Ask the Expert” online chat series. Please join in with Dr. Stan Appel and Dr. Merit Cudkowicz as they discuss clinical trials in ALS.

dr-cudkowicz (May 6, 2009 2:29:50 PM)
Welcome and thank you for joining today! Merit

dr-appel (May 6, 2009 2:30:22 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:30:31 PM)
Welcome Dr. Appel!

ChatMaster (May 6, 2009 2:30:41 PM)
Hello everyone! Welcome to the Clinical Trials in ALS Chat.

lindaF (May 6, 2009 2:30:51 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:30:58 PM)
Two of the nation's most respected leaders in ALS research, clinical trials and patient care will now kick off MDA's ALS Awareness Month “Ask the Expert” online chat series. Please join in with Dr. Stan Appel and Dr. Merit Cudkowicz as they discuss clinical trials in ALS.

ChatMaster (May 6, 2009 2:31:22 PM)
We are going to hold this chat on a 'first asked, first answered' basis. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time.

Marash (May 6, 2009 2:31:41 PM)
ChatMaster, I have a question

ChatMaster (May 6, 2009 2:32:12 PM)
Ok, Marash I will put you first on the list

Donna G (May 6, 2009 2:32:22 PM)
Chatmaster, I have a question

peterE (May 6, 2009 2:32:24 PM)
ChatMaster, I have a question

ChatMaster (May 6, 2009 2:32:34 PM)
Let me continue with the intros

ChatMaster (May 6, 2009 2:32:36 PM)
Stanley H. Appel, M.D., is chair of the Department of Neurology and director of the MDA ALS Center at Methodist Neurological Institute in Houston. Dr. Appel is extensively involved in ALS clinical trials, and is chairman of MDA's Medical Advisory Committee and a member of MDA's Board of Directors.

ChatMaster (May 6, 2009 2:32:50 PM)
Merit Cudkowicz, M.D., is associate professor of neurology and director of the MDA ALS Center at Massachusetts General Hospital in Boston. Dr. Cudkowicz also co-directs the Northeast ALS Consortium, a group of 82 active ALS research sites throughout the United States and Canada.

ChatMaster (May 6, 2009 2:33:29 PM)
When you are directing a question or response to someone within the chat, please begin your question/response with the chatters name (Example: "dr-appel, please tell me about the latest ALS clinical trials.")

ChatMaster (May 6, 2009 2:34:09 PM)
Marash, please go ahead with your first question for the doctors

ChatMaster (May 6, 2009 2:34:31 PM)
DonnaG you will be next and then peterE

ChatMaster (May 6, 2009 2:34:33 PM)
Thanks!

Marash (May 6, 2009 2:34:55 PM)
Dr-Cidkowicz, What is the status regarding antisense drugs in respect to the SOD1 fALS mutation? What is your oppinion on its potential?

scott (May 6, 2009 2:35:52 PM)
(This user has entered Clinical Trials in ALS)

JennyG (May 6, 2009 2:36:17 PM)
(This user has entered Clinical Trials in ALS)

dr-cudkowicz (May 6, 2009 2:36:19 PM)
Marash, I have great hope for the use of antisense oligonucleotide for people with familial ALS from mutations in SOD1. We don't know the timeline yet for when the trial will start, but we are hopeful that it will be soon. The protocol should go to the FDA review very soon.

ChatMaster (May 6, 2009 2:36:31 PM)
Welcome scott and Jenny G

Marash (May 6, 2009 2:36:58 PM)
Chatmaster, I have a question

ChatMaster (May 6, 2009 2:37:02 PM)
We are going to hold this chat on a 'first asked, first answered' basis. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time.

Howard (May 6, 2009 2:37:29 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:37:39 PM)
Marash, does that answer your question? Any follow-up?

1Adam12 (May 6, 2009 2:37:51 PM)
Chatmaster, I have a question.

dr-appel (May 6, 2009 2:37:55 PM)
I'd like to second Dr. Cudkowicz's enthousiasm about the antisense trial, and also indicate that 2 other technologies to lower mSOD, shRNA and siRNA are also being explored.

Marash (May 6, 2009 2:38:07 PM)
It answers my question, I'll let the others take a turn. Thank you

ChatMaster (May 6, 2009 2:38:33 PM)
Donna G, please ask your question. Thanks Marash!

Donna G (May 6, 2009 2:38:41 PM)
dr-cudkowicz, what is the update on i plex and its availability to patients who request it.

ChatMaster (May 6, 2009 2:38:41 PM)
I will put you on the list 1Adam12!

Marash (May 6, 2009 2:39:01 PM)
Chatmaster, I have a question

dr-cudkowicz (May 6, 2009 2:40:03 PM)
Donna, I believe that the next step is for INSMED to make decision on whether they are going to proceed to a clinical trial of iplex in people with ALS. I think the FDA is only allowing compassionate use if application was submitted by a date in early March. I have not heard from INSMED though on a decision on their next steps. Merit

dr-appel (May 6, 2009 2:40:58 PM)
Since the study with IGF-1 was negative, it is not clear what dose of Iplex to use, what isoform of IGF-1 should be used, or even the potential side-effects. As a result a careful scientifici study should be carried out prior to anyone using Iplex for "compassionate use."

Marash (May 6, 2009 2:41:33 PM)
(This user has left DigiChat)

ChatMaster (May 6, 2009 2:41:37 PM)
Thanks you doctors!

ChatMaster (May 6, 2009 2:41:54 PM)
Donna, do you have any follow-up to this?

Donna G (May 6, 2009 2:42:11 PM)
dr-cudkowicz what is meant by "compassionate use"?

Marash (May 6, 2009 2:42:58 PM)
(This user has entered Clinical Trials in ALS)

dr-cudkowicz (May 6, 2009 2:43:08 PM)
Donna, The FDA allows compassionate use for some treatments for serious illnesses. Usually this happens after some initial studies are done with the drug that show safety and efficacy. The FDA typically would allow this for only a few people.

ChatMaster (May 6, 2009 2:43:09 PM)
Welcome back Marash

Marash (May 6, 2009 2:43:22 PM)
My apologies, it was a computer error.

ChatMaster (May 6, 2009 2:43:55 PM)
peterE you are next up to ask your question. thanks Donna G

peterE (May 6, 2009 2:43:59 PM)
Dr. Cudkowicz or Dr. Appel - any clinical trials involving stem cell research for PLS or ALS affected patients now that we have a President in agreement with the importance of such research in California?

Howard (May 6, 2009 2:45:51 PM)
(This user has left DigiChat)

dr-cudkowicz (May 6, 2009 2:46:10 PM)
There are several companies interested in developing stem cell research for motor neuron disorders (including ALS and PLS). The MDA is working with these companies too. I think it will likely move forward faster with this administration! There is one company, I think it is called Neuralstem, that is already in negotiations with the FDA for the first study in people with ALS. There are many challenges still to work out, what type of cells, how to administer, but the good news is that is moving forward in als.

ChatMaster (May 6, 2009 2:46:20 PM)
Welcome Howard

dr-appel (May 6, 2009 2:47:12 PM)
Peter- We did carry out a study of bone marrow stem cells in ALS and published it in the fall in Neurology. It was not efficacious. However, we are allexcited about the research that can be undertaken with embryonic stem cells. At present my concern is that we do not know enough to consider stem cells as ways to replace lost neurons. We can consider stem cells as possible ways to repair motor neurons, and for now that represents the hope of stem cells.Their mechanism of action in the repair process may be in releasing trophic factors that can repair motor neurons. Stan

ChatMaster (May 6, 2009 2:47:30 PM)
Does that answer your question peterE? Any follow-up questions?

peterE (May 6, 2009 2:47:47 PM)
Excellent- gives me hope! Thank you!

ChatMaster (May 6, 2009 2:48:12 PM)
Thanks, peterE. 1Adam12 you are up next. Please ask your question

1Adam12 (May 6, 2009 2:48:18 PM)
Dr and Dr, instead of excluding long term ALS survivors like myself from trials why aren't we studied? ala working backwards on the problem. There are 20x more long terms compared to 10 years ago.

Donna G (May 6, 2009 2:50:06 PM)
Chatmaster, I have a question

dr-cudkowicz (May 6, 2009 2:50:54 PM)
Adam, this is a good question. The reason that long term survivors are not usually included in clinical trials is that it would increase the variability and make it harder to see if a drug was effective. Harder meaning, more people in the study, longer study. I think a solution is to have a separate study for any new drug --that enrolls people who have had the illness for a long time. This would give important information and also allow for more people to have access to these new drugs. The challenge is convincing the sponsors of the studies to do this. We are trying to advocate for this. Merit

ChatMaster (May 6, 2009 2:50:56 PM)
Ok, Donna, I will put you on the list

dr-appel (May 6, 2009 2:51:11 PM)
The major difficulty is that we do not know why some paitents do much better than others, and it is possible that newer drugs may interfere with whatever is providing this longer term benefit. Also as a practical issue, if we combine short term patients with long term patients, we may not get a straight answer because of the differing rates of progression. Then we would not be able to discern differences between a placebo and an active drug.

Milton (May 6, 2009 2:51:15 PM)
(This user has entered Clinical Trials in ALS)

Marash (May 6, 2009 2:51:17 PM)
Chatmaster, I have a question

ChatMaster (May 6, 2009 2:51:41 PM)
Welcome Milton!

1Adam12 (May 6, 2009 2:51:46 PM)
thank you

MarieC (May 6, 2009 2:52:03 PM)
(This user has entered Clinical Trials in ALS)

ChatMaster (May 6, 2009 2:52:15 PM)
Okay, Marash I had you on the list already before Donna G so please go ahead with your question first Marash

ChatMaster (May 6, 2009 2:52:30 PM)
Welcome MarieC

ChatMaster (May 6, 2009 2:52:48 PM)
We are going to hold this chat on a 'first asked, first answered' basis. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time. When you are directing a question or response to someone within the chat, please begin your question/response with the chatters name (Example: "dr-appel, please tell me about the latest ALS clinical trials.")

Marash (May 6, 2009 2:53:03 PM)
May I ask a question?

ChatMaster (May 6, 2009 2:53:30 PM)
Yes, please go ahead Marash

Milton (May 6, 2009 2:53:36 PM)
I have a question.

ChatMaster (May 6, 2009 2:53:38 PM)
Donna G will be next

ChatMaster (May 6, 2009 2:53:50 PM)
Milton I will put you on the list after Donna G

Marash (May 6, 2009 2:54:41 PM)
To Either Dr, In regards to the timing of these mSOD1 (antisense etc) inhibiting drugs, what do you see as a timeline for clincial trials?

Milton (May 6, 2009 2:55:31 PM)
Can the drug Pristimine, used in myasthenia gravb is and MS, be used for dysphagia?

dr-cudkowicz (May 6, 2009 2:56:24 PM)
Marash, the antisense oligonucleotide trial is likely to be the first to start. The hope is that it will start in the fall of 2009, but it will depend on the FDA's review of the protocol. That is why it is hard to pinpoint a timeline. The other two approaches Dr. Appel mentioned, hopefully will follow soon after. I have not heard of a timeline for either yet though. Merit

ChatMaster (May 6, 2009 2:56:29 PM)
Milton, please wait with your question for now

ChatMaster (May 6, 2009 2:56:37 PM)
We will be getting to you in a few minutes

dr-appel (May 6, 2009 2:56:43 PM)
Hopefully the FDA will allow a start by the end of the year for the anti-sense trial, but Dr. Cudkowicz may have better information.. We're still not ready to use siRNA or shRNA in human ALS trials. All present studies are in animal models.

ChatMaster (May 6, 2009 2:56:55 PM)
We are going to hold this chat on a 'first asked, first answered' basis. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time.

ChatMaster (May 6, 2009 2:57:18 PM)
Marash, did that answer your question?

Milton (May 6, 2009 2:57:36 PM)
Sorry. Than you, Chat Master

Marash (May 6, 2009 2:57:45 PM)
Yes Thank You, I will ask another question after the others have gone.

ChatMaster (May 6, 2009 2:57:57 PM)
Donna G please ask your question next.

Donna G (May 6, 2009 2:58:06 PM)
Drs-ALS has been around for a long time, with all of the studies and trials that have been conducted, why have there been no definitive medical break throughs in the treatment or cure of ALS?

Marash (May 6, 2009 2:59:04 PM)
(This user has left DigiChat)

Marash (May 6, 2009 2:59:16 PM)
(This user has entered Clinical Trials in ALS)

dr-appel (May 6, 2009 2:59:33 PM)
With respect of acetylcholinesterase inhibitors like pyridostigmine, they are occasionally helpful for patients with bulbar ALS but only for the short term. They also can have side effects that are uncomfortable in ALS patients, and for the most part we no longer use it for symptomatic relief. Stan

JennyG (May 6, 2009 3:00:15 PM)
(This user has left DigiChat)

Milton (May 6, 2009 3:00:23 PM)
Thank you. I have "atypical ALS" buty have recovered full motion

dr-cudkowicz (May 6, 2009 3:00:34 PM)
Donna, Although ALS has been around for a long time, it is really only in past 10-15 years that major breakthroughs have occurred in understanding its possible cause. Better understanding of possible disease mechanism has led to animal and cell models to screen therapies in. We are really in a time of hope for ALS. There are many more scientists studying ALS now, and there are many treatments being tested in people with ALS throughout the world. I think that we are close to breakthroughs. These couldn't have occurred through without some understanding of disease pathways.

ChatMaster (May 6, 2009 3:01:28 PM)
Milton and Donna, do you have any follow-up questions for the doctors?

Marash (May 6, 2009 3:02:03 PM)
Chatmaster I have a question

Milton (May 6, 2009 3:02:04 PM)
No thank you. Your reply greatly appreciated = Milton

RayZ (May 6, 2009 3:02:10 PM)
(This user has entered Clinical Trials in ALS)

Donna G (May 6, 2009 3:02:11 PM)
How can I get info about participating in a clinical trial? Is there a network to get in touch with Drs who are conducting trials?

peterE (May 6, 2009 3:02:13 PM)
ChatMaster I have a question

ChatMaster (May 6, 2009 3:02:35 PM)
Okay, Marash and peterE I will put you on the list

dr-appel (May 6, 2009 3:02:55 PM)
You're rightthat we have more basic knowledge about ALS then we have ever had, but ALS is so heterogenous that no single agent is likely to provide the "cure." On the other hand our patients are living longer with all the advances of the multidisciplnary clinics and BIPAP. So ALS is a treatable disease at the present time, even if we don't have a cure.

Milton (May 6, 2009 3:03:16 PM)
Yes, I have full motion. Dr. Mitsumoto, however, still calls it atypical ALS.

JennyG (May 6, 2009 3:03:48 PM)
(This user has entered Clinical Trials in ALS)

dr-cudkowicz (May 6, 2009 3:04:03 PM)
Donna, there is a website called www.clinicaltrials.gov that posts all active trials in ALS throughout the world. The MDA and ALSA websites also post active trials with list of contacts. Also, your ALS physician should be able to direct you to trials available. Merit

ChatMaster (May 6, 2009 3:04:32 PM)
Okay, Marash you are up next. Please ask your question

Donna G (May 6, 2009 3:04:47 PM)
Drs Thank You

RayZ (May 6, 2009 3:05:35 PM)
(This user has left DigiChat)

Marash (May 6, 2009 3:05:42 PM)
To Either Dr, What is your advice to fALS patients for ongoing and upcoming clinical trials? Which do you feel are worthwhile such as SB-509 etc.

Donna G (May 6, 2009 3:06:35 PM)
Chatmaster, I have a question

dr-appel (May 6, 2009 3:06:41 PM)
I'm most excited about the antisense trial that was discussed previously, and we hope that it can get started by the end of the year.

dr-cudkowicz (May 6, 2009 3:07:30 PM)
For people with FALS from mutations in SOD1, I think that the trials that target lowering SOD1 are the most hopeful. This includes the antisense oligonucleotide study and also a study Dr. Lange, at Cornell is leading of pyrimethamine in FALS SOD1 ALS. For FALS from other genetic mutations, I think looking at all treatment options that are out there, like those for people with sporadic ALS makes sense.

ChatMaster (May 6, 2009 3:08:23 PM)
peterE please ask your question

Milton (May 6, 2009 3:08:29 PM)
(This user has left DigiChat)

scott (May 6, 2009 3:08:35 PM)
ChatMaster, I have a question

Marash (May 6, 2009 3:08:36 PM)
Chatmaster I have a question

ChatMaster (May 6, 2009 3:08:43 PM)
Donna G you are on the list

peterE (May 6, 2009 3:09:23 PM)
Drs motor neurons have the ability to regenerate or at least "rewire" themselves. Any study of why this is not always the case in PLS or ALS patients?

dr-cudkowicz (May 6, 2009 3:11:03 PM)
Peter, Motor neurons can grow/spread to cover more muscles (reinnervation). In ALS though it is thought that this repair process can not keep up with the pace of damage to motor neurons. Merit

ChatMaster (May 6, 2009 3:12:22 PM)
Donna G you are up next.. Please ask your question

Donna G (May 6, 2009 3:12:30 PM)
Drs- Whenever I ask my ALS Dr at Columbia about trials, especially IPLEX, she always answers that her hands are tied. Why is it that more consideration is not paid to the patients who are willing to take part in these trials?

dr-appel (May 6, 2009 3:12:31 PM)
It's clear from animal studies that there are multiple reasons that motor neurons don't regrow and "rewire," We really do not have extensive information as to why this doesn't happen in PLS or ALS. However, it is clear that in many patients the motor neurons are still present but they have "detached" from the muscle, and the goal is to get them to regrow and "rewire, ." to compensate for the onging destructive process.

dr-appel (May 6, 2009 3:14:33 PM)
It is clear that a full scientific study needs to be carried out with Iplex, and that study is usually sponsored by the parent company, in this case Insmed.

dr-cudkowicz (May 6, 2009 3:15:26 PM)
Donna, the ALS community has been trying to get INSMED to make public their data on iplex so that patients and physicians can look at data and make informed decision on whether there is a reason to pursue this treatment for ALS. INSMED has not yet done that (shared the data openly, or make public decision on whethe rthey will carry out more studies).

ChatMaster (May 6, 2009 3:16:05 PM)
Thank you doctors, Marash please go ahead with your next question

Donna G (May 6, 2009 3:16:09 PM)
Thank You Drs.

Marash (May 6, 2009 3:16:54 PM)
To both Drs, What would you reccomend an als patient do daily to cope/treat the disease (Vitamins? , Excersize? Diet, Etc)

dr-appel (May 6, 2009 3:19:00 PM)
What is mnost important is that you avail yourself of the closest multidisciplinary clinic. Overall treatment involoves all the parameters you mentioned, and only a team of experts can provide you with the care of personalized medicine. You can consult your MDA reps, and they can get you in touch with the closest MDA ALS Center.

dr-cudkowicz (May 6, 2009 3:19:42 PM)
I usually recommend exercise, attention to diet to avoid weight loss (this is very important), proactive management of any respiratory symptoms, riluzole and consideration of participating in a clinical trial. Depending on symptoms, seeing a physical therapist may be helpful. Seeking care at an ALS multidisciplinary clinic is very helpful.

ChatMaster (May 6, 2009 3:20:05 PM)
Okay, Scott, please ask your question next.

scott (May 6, 2009 3:20:11 PM)
Drs. Appel and Cudkowicz, you are both involved in numerous clinical trials - could you share a little about the study you're most excited about - either yours or someone else's?

dr-cudkowicz (May 6, 2009 3:22:33 PM)
There are two company sponsored trials that I think are of interest. One is by Teva pharmaceuticals and involves a drug called Talampanel. This is a drug that blocks a receptor for glutamate. An earlier study in about 60 people with ALS looked promising. This study is fully enrolled and results hopefully will be available in early spring 2010. The other company led trial is by KNOPP. This is drug that is supposed to work by improving how mitochodria, the energy producing parts of the cell, work. They just finished a pilot dosage finding study and are planning a larger study to determine efficacy.

dr-appel (May 6, 2009 3:22:46 PM)
Dr. Cudkowicz is the lead investigator in numerous trials, and I would defer to her in this regard. My own bias is that targeting the immune/inflammatory mechanisms, which we are doing in animal models, provides a novel therapeutic approach- hopefully in the near future in ALS.

dr-cudkowicz (May 6, 2009 3:23:27 PM)
Continued: Lastly, there is a study that our group is running of ceftriaxone in ALS. This is based on a lot of science that shows that this drug helps the brain get rid of glutamate more efficiently. This study is enrolling now at about 60 centers in the US and Canada. Merit

ChatMaster (May 6, 2009 3:23:53 PM)
The Clinical Trials in ALS chat will end in 5 minutes. Does anyone else have a final question?

Donna G (May 6, 2009 3:24:26 PM)
Chatmaster

Donna G (May 6, 2009 3:24:33 PM)
Ihave a question

ChatMaster (May 6, 2009 3:24:43 PM)
Donna G, please go ahead with your question

Donna G (May 6, 2009 3:25:38 PM)
dr cudkowicz, you mentioned a trial that is currently enrolling, do you have any info about participating in this trial?

ChatMaster (May 6, 2009 3:27:20 PM)
The Clinical Trials in ALS chat will end in 2 minutes.

dr-cudkowicz (May 6, 2009 3:27:25 PM)
Donna, The ceftriaxone trial is currently enrolling people with ALS who have had the illness 3 or fewer years. There are centers throughout the US and canada so hopefully there is one close to you. To find out centers near you, plesae email alswartz@partners.org.

ChatMaster (May 6, 2009 3:27:48 PM)
Transcripts of this chat will be posted at www.mda.org/chat/transcripts.html in the next week.

Marash (May 6, 2009 3:27:52 PM)
Thank You Dr's and Jenny for your time. I hope that these chats can occur more often. They are most helpful. Thank You and have a nice day.

ChatMaster (May 6, 2009 3:28:05 PM)
Thank you Dr. Appel and Dr. Cudkowicz for your participation in this experts chat. We look forward to having you again at an Experts chat.

peterE (May 6, 2009 3:28:13 PM)
Yes Thank you!!!

1Adam12 (May 6, 2009 3:28:20 PM)
thanks

Donna G (May 6, 2009 3:28:22 PM)
Thank you Drs, this has been very informative

1Adam12 (May 6, 2009 3:28:23 PM)
:)

ChatMaster (May 6, 2009 3:28:25 PM)
MDA has 4 Living with ALS chat groups that meet weekly. Please see our chat calendar at www.mda.org/chat/calendar.html for a listing of MDA Chat groups.

dr-appel (May 6, 2009 3:28:32 PM)
Our pleasure !!!!

ChatMaster (May 6, 2009 3:28:37 PM)
Thank you all for your participation! Chatters can click on the Rooms tab and double-click on MDA Foyer if you want to keep chatting.

dr-cudkowicz (May 6, 2009 3:28:37 PM)
Thank you! Merit

dr-cudkowicz (May 6, 2009 3:28:44 PM)
(This user has left DigiChat)

JennyG (May 6, 2009 3:28:48 PM)
(This user has left DigiChat)

ChatMaster (May 6, 2009 3:28:51 PM)
MDA will be having another ALS expert chat on May 12 at 11 a.m., EDT.

lindaF (May 6, 2009 3:28:51 PM)
(This user has left DigiChat)

Marash (May 6, 2009 3:28:52 PM)
(This user has left DigiChat)

anita (May 6, 2009 3:28:54 PM)
(This user has left DigiChat)

donS (May 6, 2009 3:28:56 PM)
(This user has left DigiChat)

pete46 (May 6, 2009 3:28:56 PM)
(This user has left DigiChat)

dr-appel (May 6, 2009 3:28:57 PM)
(This user has left DigiChat)

1Adam12 (May 6, 2009 3:29:00 PM)
(This user has left DigiChat)

ernestina (May 6, 2009 3:29:01 PM)
(This user has left DigiChat)

peterE (May 6, 2009 3:29:02 PM)
(This user has left DigiChat)

MarieC (May 6, 2009 3:29:06 PM)
(This user has left DigiChat)

scott (May 6, 2009 3:29:06 PM)
(This user has left DigiChat)

ChatMaster (May 6, 2009 3:29:07 PM)
I am going to close the Clinical Trials in ALS chat now. Goodbye!

Donna G (May 6, 2009 3:30:03 PM)
(This user has left DigiChat)

bivoj (May 6, 2009 3:30:10 PM)
(This user has left DigiChat)