Search results for query: *

Dear People with ALS in the US (or caregivers who can respond for them), This short survey is provided by a volunteer group working with the CDC ALS Registry on improvements to the project. Your responses will be a huge help. Thank you. CDC ALS Registry Survey

This was executed as a completely volunteer effort by an ALS caregiver and people w ALS and other caregivers. They wanted to provide a dashboard with information on promising therapies that would save others, especially the newly diagnosed, hours of searching. There is also a PaCTD clinical...

Two bills were introduced in US last week and need your help to move them ahead asap. Thanks if you can read and act and spread the word. They are bipartisan and are designed to help provide paths and resources that can move ALS therapy candidates forward more quickly. These came largely from...

This is supported by multiple ALS organizations. https://iamals.org/everycommunity/ You may submit your name as someone with ALS, your name if you are a primary caregiver, or the name of a loved one lost to ALS. The idea is to provide a powerful visual that every community is affected...

The Patient Fellows program continues for a third year to include people with ALS MND in the annual largest scientific Symposium on ALS MND. Deadline for applications is Aug. 19. Fellowships include registration at the Symposium for the person with ALS MND plus one caregiver, basic hotel for...

Please consider participating in the second annual www.MoreThanOurStories.org Feb 12-13 in Washington, DC. This is a different kind of advocacy conference. No Powerpoint. No formal presentations. Lots of healthy discussion about government policies that can be improved for people dealing...

For anybody with ALS MND who is interested in the science and can get to Glasgow, the Patient Fellows Program is now open for applications... https://alsmndpatientfellows.wordpress.com/ The fellowship covers symposium fees and hotel and a little misc. Thanks to ALSTDI, RobG for coordinating...

This questionnaire was written by individuals with ALS. The results will be used to relay the needs and opinions of People with ALS to the ALS Association and FDA in regards to the recently issued FDA Guidance Document. Please make your voice heard. It will only be open for a few days since...

https://journals.lww.com/neurotodayonline/blog/NeurologyTodayConferenceReportersAANAnnualMeeting/Pages/post.aspx?PostID=65 LOS ANGELES–An experimental drug that regulates inflammation and showed a strong signal in a pilot study in patients with amyotrophic lateral sclerosis (ALS) failed to...

The FDA has issued its draft guidance and we are in the comments period. The guidance is not acceptable in the opinion of many of us. It "strongly recommends that sponsors conduct randomized, placebo-coltrolled, double-blind studies..." "Historically controlled trials for ALS are strongly...