advocacy

My Right To Try Now | Advocacy For Terminally Ill Patients They have three pieces of legislation for your consideration. I think that the Regrow Act has some special potential to introduce the concept of conditional approvals for cell therapies. I hope that all who can be there will attend. I...

3 in June. Anyone attending the Seattle one is welcome to couch surf a few minutes from the venue.

Just a reminder that public comments on this document are due by the 30th. And a side note: for those of you hunting prognostic markers/measures, a number are mentioned in recommending possible outcome measures for clinical trials. Not all of them are based on equally good data, but they may...

Who is in town?

We dropped Heidi off at my son's place and made it to the hotel last night. An old Air Force friend of mine who has MS is supposed to drive into DC with his wife to have lunch with us and (hopefully) get some inspiration from the guy with ALS. It's starting to look like a catch up on sleep day...

To all PALS and CALS who have experienced shortfalls in the provision of DME and home health services (meaning, I suspect, all of us), you may be interested in knowing that these huge problems are not on the list of the ALS Association’s priorities for its “Advocacy Day and Public Policy...

Is anyone planning to attend the ALS Advocacy Conference in Washington,D.C.? May 8-11

Registration rates go up August 19 -- Registration | MND Association The MND Association sets the registration rules, so we need to look to them about the lack of consideration for PALS, CALS. ALS Advocacy: Let Me In, Whee-Ooh I went last year and am not a neuroscientist by any means, but I...

Some news about an oldie -- ALS Advocacy: Of the PALS, By the PALS, For the PALS If any PALS or CALS won't qualify for the trial or interested in expanded access, I urge you to email Mr. Casey asap. Thanks.

I received this today: Dear Michael, Thanks to your efforts and those of thousands of other ALS advocates, Congress has taken significant action during the past month to support the fight against ALS. The updates below reflect the power of your advocacy and demonstrate that the ALS...