Join Our Voice

Thank you for taking the time to read this. We please ask, if you could, to take five minutes from your day, in support of Dan and the rest of the pALS suffering with this debilitating disease. This page contains lots of easy-to-use tools, links and information, that you can use to send to politicians, the FDA, journalists and other influencers, to help them not only learn about ALS, but also how to affect positive change.

  • Letters/Email Content – copy/paste and send these out, use these to reach out to others.

  • Links To – useful information, petitions, campaigns etc.

  • Downloads  – shareable communications that can easily be downloaded, printed and shared.

It’s easy to help, it just takes a few easy steps to make a difference.

Please visit our Facebook page to join in the conversation: www.facebook.com/addressALS

Contact Your Local Representatives

1) Locate your local representatives (2 senators, 1 congressman) Click the button below to find your representative.

 

OR send a text message with the word “Resist” to 50409 on your cell-phone.

Use the guidance of the ‘ResistBot’, – it’s a very nifty way of finding your local representatives and sending a message. (You may also find “ResistBot” via Facebook messenger).

 

 2) Copy and Paste the letter: “Letter To Congress” in the link below.

(Modify it to suit to your liking) and then send it to your representatives.

 

 CLICK HERE to copy and paste this letter

You may email to your representative or you may print it out and sent it via USPS.

We highly recommend that you print out a photograph of Dan Shultes and his family (or the person on whose behalf that you are sending the letter).

 

Get Your Representative to Join The ALS Caucus

Check HERE to see if you local representative is already part of the ALS caucus. (This will open a new page on the iamals.org site. Scroll down the page to the section: “Congressional ALS Caucus Members”.)

Joining the ALS Caucus Will Enable Representatives to:
1. Link into an active network of constituent advocates.
2. Raise critical awareness for the disease and other neurological conditions.
3. Help generate impactful press opportunities for its members to raise awareness for this fight.

For Members of the House of Representatives:

SEND THEM THIS ONE-PAGER OUTLINING WHAT THE CAUCUS REPRESENTS

For Senators:

SEND THEM THIS ONE-PAGER OUTLINING WHAT THE CAUCUS REPRESENTS

Thanks to our friends at https://iamals.org for helping make this happen.

Please Contact Your Representatives - Get Them To Back Newly Introduced Bills.

Ask for these Bills to become Law

Contact The FDA

Sadly there is no current drug in the ALS FDA pipeline that can stop or reverse the symptoms of ALS. There’s no approved treatment readily available to save 94% of the ALS sufferers who are living with this devastating disease.

Only BrainStorm Cell Therapeutics NurOwn® therapy has proved to be one of the viable treatments currently in existence. However it is still in the FDA trial system.

Just to note: 70,000 ALS patients have died in the short time that BrainStorm Cell Therapeutics have been following the US FDA rules for approval of NurOwn®.

We must therefore continue to push for immediate FDA approval of NurOwn®.

Stephen M. Hahn M.D. is the new commissioner at the FDA,  he is backed by the power and influence of Big Pharma. We must encourage Dr. Hahn to respond swiftly, to expedite NurOwn® the first effective ALS treatment in 150 years.

 

 

 

ADD YOUR SIGNATURE ON A THE LETTER TO THE COMMISSIONER OF THE FDA

(Clicking on the link below will open a new window and take you to the https://iamals.org site – Thanks to “I AM ALS” for putting this together).

CLICK TO SIGN LETTER

Send A Letter

We must communicate directly with the FDA. We have prepared a  letter, that you may copy and print out. This one is to be sent to Stephen M. Hahn M.D. newly elected Commissioner of Food & Drugs at the FDA. Please DOWNLOAD this postcard, read on (right-side on this webpage) for instructions on how to use this. Please write your own message inside, make it personal, explain how ALS is impacting you, your family and those close to you.

 

INSTRUCTIONS:

Please download the pdf. postcard, click here to DOWNLOAD. Print it out, fold in half, sign, add a stamp, tape it up and send to the FDA. You may, if you wish add a personal note and sign inside the card before taping. Please keep the white margins empty (required by the USPS for more efficient processing).

 

 

SEND AN EMAIL TO MEMBERS OF THE FDA

(Modify the suggested emails in link below it to suit your liking) and then send it. Please also, click the link below for a list of email addresses of people to send to at the FDA. This contains updated email addresses.

CLICK HERE to copy and paste this suggested email

 

 

There are several petitions out there relating to ALS. We’ve picked a couple that have the most poignant and relevant goals. Please take a moment to sign. The more signatures – the more chance of being heard.

 

 

Petitions

FDA Approval for Life-Saving NurOwn for ALS Patients

Our goal is to reach 150,000 signatures and we need more support. You can read more and sign the petition here:

CLICK TO VISIT CHANGE.ORG AND SIGN

Allow people with ALS access to the drug “CuATSM” under FDA Compassionate Use

Our goal is to reach 200,000 signatures and we need more support. You can read more and sign the petition here:

CLICK HERE TO VISIT CHANGE.ORG TO SIGN

 

 

Contact The Government

Collectively we can make a difference. We’ve been informed that the emails to government officials have been getting through and they are getting the message.

Please click below to find our sample email letter that you may send, plus a long list of email recipients in government. We’ve also included a list of instructions to help make it easier.

Don’t forgot to adjust the letter to add the name of the person on whose behalf you are writing the email. We’ve added Dan Shultes as an example, please feel free to keep Dan’s name, or change for your own family member/friend or colleague who is battling this devastating disease:

CLICK HERE TO SEE SAMPLE EMAIL AND ACCESS EMAIL LIST.

Thank you for your support.

 

 

 

Call the White House and Talk to a Real Person

Call the White House comment line, (202) 456-1111.

Talking points:

  • You are calling on behalf of Dan Shultes, {or insert other name here} he is one of 30,000 Americans suffering from ALS
  • You would like the President to sign an Executive Order allowing for the immediate APPROVAL of NurOwn®, developed by BrainStorm Cell Therapetics
  • Time is not on our side, the prognosis for most people diagnosed with ALS is a short life-span of 2-4 years
  • Within 6 months of Dan {or insert other name here} being diagnosed with ALS, he has lost the ability to Dan lost the ability to talk, to walk by himself, to undertake daily tasks, such as getting out of bed in the morning, or brushing his teeth. Simple daily tasks, that we take for granted are impossible for Dan now.
  • Thank you the person answering the phone by name ;-)