ALS Advocacy Support Community

The ALS Advocacy Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Ask us about this: Propofol

By edjnc · New reply 12:29 pm
Discussion in Children and families · 3 replies
Re posting: "Specific Improvements For Me: Improvement in right sided swallowing. Can eat and drink currently without coughing every single time I do either (which was the case before my biopsy). Also ...

Please consider sending your version of this snail mail to your Congress pe

By edjnc · Posted 12:00 pm
Discussion in Children and families · 0 replies
Please consider sending your version of this snail mail to your Congress people. This is ALS month. We all need to become more like the HIV activists. if possible use personal stationary, tell us if you ...

Precision StemCell

By edjnc · New reply May 21, 2013
Discussion in Children and families · 30 replies
Quote from a recent patient email. We hope that comments such as this one will be posted on PLM as well as a new Patient Managed Google group site which will contain more in-depth information and discussion ...

FDA suggests guidelines for expanded access

By Sacramento · Posted May 21, 2013
Discussion in Children and families · 0 replies
The FDA has released draft guidelines on how it intends to regulate expanded access to experimental drugs. The guidance on investigational new drug applications is in Q/A format; feedback is due by July ...

Propofol and ALS, arranged a meeting with an anesthesiologist

By edjnc · New reply May 20, 2013
Discussion in Children and families · 6 replies
Dr. W is actively pursuing this subject. He is Keeping three of us updated on progress. please read below and send me the information (EdJohnson@alumni.duke.edu) he has requested. Or you can join and ...

Five million

By Brian · New reply May 18, 2013
Journal · 205 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

because that would make three

By edjnc · New reply May 17, 2013
Discussion in Children and families · 3 replies
jchexpress wrote: My only hope is it continues because that would make three (Cypress, Louis's wife and myself - I had a lung biopsy three weeks ago and was sedated with Propofol and still maintain the ...

coconut oil for ALS

By mumucu · New reply May 16, 2013
Journal · 16 replies
Are there someone insisting on using coconut oil for ALS treatment for a while? What's your current situation? My mom was diagnosed ALS last year and I want to try coconut oil if it works. If it works ...

Cytokinetics, Inc. Annual Shareholder Meeting

By edjnc · Posted May 16, 2013
Discussion in Children and families · 0 replies
Attend this meeting to Call for early access, Accelerated approval, or breakthrough designation. Only one ALS family member attended last year. Very few people attend because there are so few shareholders ...

Deanna's Protocol

By JCase · New reply May 15, 2013
Discussion in Children and families · 200 replies
My Dad was recently diagnosed with ALS. It is sporadic and not familial and started with twitching and weakness in the legs. In July of this year, he started falling, in August he could only walk about ...

Flu Vaccine triggered ALS?

By davidpaul · New reply May 13, 2013
Journal · 5 replies
Because of my husband profession (Registered Nurse) he was pressured into receiving a flu vaccine on November 11, 2012. In mid-December 2012, he started having symptoms of slurred speech, twitching in ...

helped launch the ETF

By edjnc · Posted May 12, 2013
Discussion in Children and families · 0 replies
ALSTUN is proud to have helped launch the ETF. Congratulations and many thanks to Jess. Also many thanks to Tom for providing the bulk of our budget that allowed us to assist with funding. http://www.prnewswire.com/news-releases ...

photos from the ALS Association meeting taking place in Washington DC today

By edjnc · Posted May 10, 2013
Discussion in Children and families · 0 replies
photos from the ALS Association meeting taking place in Washington DC today https://docs.google.com/file/d/0BwVQbhe0 302IV3Bac0FBMkVSMUk/edit?usp=sharing https://docs.google.com/file/d/0BwVQbhe0 302Ic05XLTZMbldPc2M/edit?usp=sharing ...

Diagnosing ALS

By laurjo · New reply May 9, 2013
Discussion in National ALS Advocacy Day · 2 replies
They have been running tests on my husband for several months now trying to figure out what is wrong with him. About a year ago he started in with pain and weakness in his legs. Then he started in with ...

There are available treatments!

By edjnc · Posted May 8, 2013
Discussion in Children and families · 0 replies
Thank you Dale For the terrific selection of treat us now! Posters! Here is a link to one sample. https://docs.google.com/file/d/0BwVQbhe0 302IaUFtaDd6Nk1VRjA/edit?usp=sharing Suggest everyoneÂ ask for ...

MCI 186 edaravone

By edjnc · Posted May 7, 2013
Discussion in Children and families · 0 replies
Dear Dr. John Baugh: Thank for your letter about our development of MCI-186 for the treatment of ALS. As you've already aware, we are focusing on the development in Japan . We believe that it could take ...

> ALSUntangled has already finished the Deanna Protocol analysis:

By edjnc · New reply May 7, 2013
Discussion in Children and families · 13 replies
> ALSUntangled has already finished the Deanna Protocol analysis: > > http://informahealthcare.com/doi/pdf/10. 3109/21678421.2013.788405 > > My PAL is currently on it, only having some of the main supplements ...

A new Inspire report in collaboration with Stanford Medical School

By Brian · New reply May 5, 2013
Journal · 84 replies
As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

15 minutes available during the May 10

By edjnc · Posted May 5, 2013
Discussion in Children and families · 0 replies
… If you have 15 minutes available during the May 10 ALS Association meeting we would love to hear from you. Please let us know. treat.us.now@gmail.com http://treatalsnow.org ...

als and swollen feet

By ashishhari · New reply May 3, 2013
Discussion in Familial ALS · 15 replies
my wife has als and both her feet remain swollen at most times. could anyone tell me if this is common with als patients and what all could be done to reduce/remove the swelling and ease her discomfort ...

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The ALS Advocacy Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by The ALS Association, an Inspire trusted partner.