If you are an ALS patient and believe in the ALS Treat Us Now mission, please print out the sign-on letter linked below for Expanded Access/Emergency Treatment and ask your neurologist to sign.
Once the statement has the physician's signature, please send us a copy, either scanned and e-mailed or sent via regular mail (contact information is contained in the attached document). These letters of support are imperative for us to share with the FDA, our elected officials, and our partners in this effort, which we will do as they are collected.
Write your Senators and Reps! Make them hear you! Please be sure to write FDA Commissioner Margaret Hamburg, MD. If you are e-mailing these people make sure you include her and CC: (send a copy to us) at Treat Us Now!
Below are two sample letters to get you and you family started in your personal mission! Please include your personal pleas and why expanded use drugs are important to you! On our Links Page you will see a link to the HELP Committee. There you will find a listing of your Senators to the right. If you click on their name it will take you to a their personal page and you will see how to contact them on the left.
Dear Senator ,
Treat Us Now:
Margaret Hamburg, MD:
Food and Drug Administration
10903 New Hampshire Ave
Silver Spring, MD 20993-0002
I urge you to support the bills that deliver hope to ALS Patients.
Please also ask FDA Commissioner Margaret Hamburg to ask her staff to
allow ALS patients access to these three treatments Dexpramipexole,
Cytokinetics CK-357, NP 001 after Phase II. We ALS families and patients
deserve the same welcoming support for early availability that allowed
HIV and cancer patients to live a bit longer.
S. 2236: Advancing Breakthrough Therapies for Patients Act of 2012
Sen. Michael Bennet [D-CO]; Sen. Richard Burr [R-NC]; Sen. Orrin Hatch [R-UT]
S. 2281 Expanding and Promoting Expertise in Rare Treatments Act of2012
Sen. Sheldon Whithouse [D-RI]
H.R. 3497 Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network: MODDERN Cures Act of 2011
Rep. Lance Leonard [NJ-7]; Rep. Inslee, Jay [WA-1]
S. 2113 Transforming the Regulatory Environment to Accelerate Access to Treatments
Sen. Kay Hagan [D-NC]; Sen. Barbara Mikulski [D-MD]
I am a supporter of the ALS petition asking you and the FDA for help:
Please ask FDA Commissioner Margaret Hamburg to accept the Phase II
trial results verifying safety and efficacy of these promising ALS
treatments, Dexpramipexole, NP 001 and Cytokinetics CK-357.
I, (or Spouse etc.) am dying from ALS. There is no cure. All 35,000 plus ALS
patients have access to only one marginally life prolonging treatment.
Over 12,000 people have signed the petition asking the FDA to allow
access to these promising life extending drugs.