PSP Association


ToGeorge Nov 28 at 10:29 AM

Nov 26 at 9:14 AM

CurePSP Needs Your Help to Educate the FDA

The US Food and Drug Administration (FDA) needs to be educated about PSP, CBD and the full spectrum of frontotemporal degenerative brain diseases (FTD). Your message will help ensure that FDA regulators understand these diseases and the devastating impact they have on patients and families.

For a limited time, the FDA is accepting nominations for specific diseases to be included in a series of public meetings they will sponsor in 2016-17, as required under the Prescription Drug User Fee Act (PDUFA). These public meetings are an opportunity for patients, caregivers and other stakeholders to tell the FDA about the impact of disease symptoms so that FDA reviewers may be better informed during the regulatory review process for new treatments and therapies. One factor that will determine which diseases are covered will be the number of emails and letters the FDA receives advocating for each disease. We need YOUR help in ensuring that PSP, CBD and all FTDs are included!

Here's how you can help.

Step 1: Download this form letter and customize it to include your name, city and state of residence, which disease you are affected by, and your role (patient, caregiver, advocate, etc.)

Step 2: Point your internet browser to the following webpage:!submitComment;D=FDA-2012-N-0967-0595

Step 3: Copy your customized letter in its entirety and paste it into the comment section on webpage linked above. Make sure your comment contains the FDA docket number (FDA-2012-N-0967).

Step 4: Complete the rest of the form and submit it to the FDA. Be sure to identify yourself as an “individual consumer” in the required category list just before hitting the continue button.

In order for your comment to be received by the FDA, it must be submitted by Friday, December 5, 2014.

Thank you for your support.

Foundation for PSP | CBD and Related Brain Diseases

800-457-4777 | |

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6 Replies

Hi, is this the letter you were referring to in your next post? I'm in the UK, so I don't suppose anything I send will be counted! I wish them luck, let's hope they manage at a little progress!

Lots of love



I have submitted the form from the UK and it does accept it. Hopefully they will take note of the number of people who have responded from across the world and not just USA.


Instructions clear and form submitted.

I have forwarded info to our neuro nurse team and asked them to inform consultants etc. Hopefully it will result in several more submissions.


Thanks for forwarding this. Will do it.


I forwarded the instructions and letter to friends and asked them to write the FDA. They said yes! Yay! Can't hurt, might help. It originally came in an email from CurePSP. If you wish, I can forward the email to you if you send me your email.

Christine 47


Please and Thank You


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