PSP Association


could someone help me post a letter on this site it is from the PSP foundation asking for cargivers family anyone who as taken part in being or taking care of someone with PSP to help them more understand to educate them on the importance of finding a cure explaining the troubles the emotions the differnt stages we all go through not only as the one who has PSP but also the pain and how hard it can be and emotional the more that send this in the more the FDA will have to take more notice on what PSP does all around to every one Please help

thank you anyone


8 Replies

Hi Kryste, I'm no good at doing anything except posting but I'm sure someone will know. If you don't get the answer try clicking on "Help" in the green strip at the top of this page. Then on the right hand side click on "email" where you can ask the question and get help from technical support. I've done this a couple of times with good results and I'm awaiting a reply to another question. I hope you manage to do it as the letter sounds interesting.

Nanna B


Thanks I hope it works I know everyone will be interested now I sent the email to who every I was able to attatch the letter now will they post it or just write back do you know


I've never tried to attach anything but if they don't they may tell you how to do it.


Thanks NannB I have tiried everything i think my computer might be to old The letter has to be in by dec 5 so I am going to give you the niumber its 1-800-457-4777 Cure PSP foundation for psp-CBD and related brain disorders


Can you just copy and paste the letter?



HERE ARE THE INSTRUCTIONS....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:!submitCom...

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.



Division of Dockets Management (HFA-305)

Food and Drug Administration

5630 Fishers Lane, Rm. 1061

Rockville, MD 20852

Docket No. FDA-2012-N-0967 Patient focused drug development public meetings comments

Dear Sir/Madam:

We strongly urge you to consider adding progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and the full spectrum of frontotemporal lobar degeneration disorders (FTD) to your list of disease areas selected for the PDUFA public meetings held by the FDA to learn about disease impact on patient’s daily lives and the treatment benefits that matter most to patients and families. The FTD spectrum of disorders has been identified under NAPA as closely related to Alzheimer’s disease related dementias (ADRD) that is a national priority. The FTD disorders are rare diseases and encompass a spectrum of disorders that include behavioral variant FTD (bvFTD, also called Pick’s disease), the primary progressive aphasias (PPA), progressive supranuclear palsy (PSP), cortical basal degeneration (CBD) and more recently, FTD-ALS. Patients affected may demonstrate pronounced behavioral changes, loss of cognitive skills, and severe difficulty with language and movement. The spectrum of FTD disorders affect people as young as forty. Persons may live on average 10 years or less after diagnosis, and currently there are no approved treatments or therapies.

•FTD brain disorders are progressive conditions that severely affect the patient’s ability to carry out activities of daily living without caregiver support. FTD patients commonly lose their jobs and exhibit impulsive or inappropriate behaviors. Some lose the ability to use language or communicate with others; some show progressive deterioration of motor coordination and are eventually confined to a wheelchair.

•Clinical trials for neurological diseases do not capture or address essential aspects of FTD brain disorders such as lack of empathy, loss of interest in activities or feelings for others – symptoms which significantly impact their relationships with family and friends.

•Currently there are no therapies for FTD brain disorders, and only partial, symptomatic management using medications approved for other diseases, none of which improve survival or allow patients to return to their former role in their families or community or workplace.

•FTD disorders may negatively affect others in the family. The financial impact of these diseases is often devastating.

FTD patients and their caregivers are a community that is engaged and willing to participate in activities that will support more patient-centric therapeutics and clinical trial development. This year, the NIH generously funded two clinical research networks for the wide spectrum of FTD disorders in order to gather sufficient clinical data to support drug development and to create an infrastructure that coordinates efforts among top academic medical centers across the US. Giving FTD patients, caregivers and other stakeholders a voice at the FDA PDUFA public meetings of 2016-17 would serve to better inform these efforts as well as those of the FDA in their regulatory review process.


Name, City, State

(indicate role/title, for example: “Caregiver for my wife, diagnosed with bvFTD”)


You are totaly the best thank you


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