senate

  1. D

    Convention on the Rights of Persons with Disabilities

    Hi, Folks. I bet you didn't know that Article 19 of the Convention on the Rights of Persons with Disabilities provides that a state is required ensure that disabled people have access to adequate support to allow them to remain at home. Specifically, the Convention requires a government to...
  2. F

    Life is GREAT!

    Hey, all y'all... there are ever so many new faces in here, and I truly am saddened to be welcoming you, considering the price of admission to this exclusive club. It has been awhile since I've posted, but wanted to bring you all up-to-date on the goings on. Life has been good, but the life of...
  3. chally

    21 century cures act

    Hey all did ya see that this act passed senate and now just need pres to sign. What it means is a boat load of $$$ will be available for research and streamlining possible drugs that could help folks. This is what we were advocating up in DC last spring for. So there's some good news. Love ya...
  4. maryhahnward

    Caregiver Support Bill

    From AARP: "Support and Pass the RAISE Family Caregivers Act (S. 1719/H.R. 3099) Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI) and Representatives Gregg Harper (R-MS) and Cathy Castor (D-FL) introduced the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act...
  5. Atsugi

    Increased funding for ALS research

    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...
  6. MaxEidswick

    your advocacy

    Dear Max, Thanks to your advocacy throughout the year, this week the House of Representatives has advanced legislation to help find a treatment for ALS and to improve the lives of people living with the disease. An update on the latest activity is below. The action taken by Members of...
  7. MaxEidswick

    Senate passed the Steve Gleason Act (S. 984)!

    Dear Max, Great news in the fight to ensure access to speech generating devices (SGDs)… less than five minutes ago, the Senate passed the Steve Gleason Act (S. 984)! The bill would restore a person’s ability to upgrade SGDs and allow people with ALS to access email, the internet and...
  8. MaxEidswick

    House Approves $7.5 Million for ALSRP

    House Approves $7.5 Million for ALSRP Dear Max, This afternoon, the United States House of Representatives passed the FY15 Department of Defense Appropriations Act and included an additional $7.5 million to continue funding for the ALS Research Program (ALSRP) at the Department of Defense. If...
  9. notme

    New Law Enacted Yesterday

    Congress Passes Bill to Expedite Approvals of New Treatments for ALS Dear Patricia, The House of Representatives this evening passed critical legislation that will help to speed access to new treatments for people with ALS! The House vote to reauthorize the Prescription Drug User Fee Act...
  10. D

    Als care within the va

    I am very concerned about the type of care our veterans are receiving from the Department of Veterans Affairs (VA), and the lack of clear guidance and policy on the most effective ALS care protocols throughout the VA. Instead of being seen by an accredited multi-discipline care team most...
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