Petition update

CALL TO ACTION please email the FDA (template below)

The Fast Movement

Nov 20, 2015 — CALL TO ACTION!!!

Many of you are asking "What's next?" and "How can I help?".

The next step in our mission to make sure our voices are heard is to send email communications to the FDA. We need ALL people who want this treatment for those with SMA to the participate to make this happen. Whether you have SMA yourself, your son or daughter is affected, you care for an SMA individual, or you just think that these adults and children need a treatment…WE NEED YOU!

The FAST Movement would like to set an initial goal of 1,000 emails sent to the FDA within 48 hours and we know that this community can do it!

Cut and paste the template below for your email. Please delete the lines where your information should be entered. Make sure that you keep the emails short, concise, and on point as the FDA isn’t concerned with pages of stories from families. We also want to make sure to keep this professional.

You can access the links to the templates on The Fast Movement on Facebook or thefastmovement.org (under petition)

Please sent email to:
John.Whyte@fda.hhs.gov
Diane.Ruiz@fda.hhs.gov
janet.woodcock@fda.hhs.gov
john.jenkins@fda.hhs.gov

In the “Cc” line please enter: INFO@THEFASTMOVEMENT.ORG so that we can track how many emails are sent
We appreciate your participation!

Template on behalf of an Individual with SMA:

Dear Dr. Janet Woodcock and FDA colleagues,

My name is ______________ from _______________. My __(son/daughter/friend, name)___ is affected with SMA Type ___. I am a member of The FAST Movement, Families for Acceleration of SMA (Spinal Muscular Atrophy) Treatments. We are a group of thousands of SMA patients, their caregivers, and advocates, writing to ask that you urgently move forward with market approval of the ISIS-SMNRx (Nusinersen) drug to treat Spinal Muscular Atrophy (SMA). SMNRx (Nusinersen) has shown safety and efficacy far beyond expectations.

____(short concise paragraph about what a treatment means to you. FDA doesn’t care much about the stories and the fluff from what we hear so if too long they won’t read it)_______________

Although SMA is a rare disease, it kills more babies and children under 2 years old than any other genetic disease. There is NO AVAILABLE TREATMENT for SMA. Each day that passes without a treatment leads to deterioration and in many cases, death. SMNRx (Nusinersen) has dramatically and positively improved the lives of so many SMA patients and it is time for everyone with SMA to have a chance. Witnessing the on-going functional improvements that so many of these treated patients are experiencing is unheard of in SMA.

We know that SMNRx (Nusinersen) may not provide such astounding improvements in every SMA patient, but we want to be clear that even stopping progression would be a benefit. Phase 3 placebo trials lasted well over a year and continuing placebo groups in a second Phase 3 clinical trial is clearly unethical. The progression of SMA within one year can be so dramatic that it is clear that we don’t have time to waste.

The lives of those with SMA is our only concern and we will continue to fight for their right to receive SMNRx (Nusinersen). Our petition has well over 100,000 signatures of those supporting the critical need for SMNRx (Nusinersen) to be made available for all suffering with SMA. The need is clear and our voice is loud, WE NEED TREATMENT NOW.

Sincerely,

___(name)___, mother/father of ___ yr old Type___, ___(name of person with SMA)

Facebook: The FAST Movement
www.thefastmovement.org


IF YOU ARE AN INDIVIDUAL WITH SMA:

Dear Dr. Janet Woodcock and FDA colleagues,

My name is ______________ from _______________. I am affected with SMA Type ___. I am a member of The FAST Movement, Families for Acceleration of SMA (Spinal Muscular Atrophy) Treatments. We are a group of thousands of SMA patients, their caregivers, and advocates, writing to ask that you urgently move forward with market approval of the ISIS-SMNRx (Nusinersen) drug to treat Spinal Muscular Atrophy (SMA). SMNRx (Nusinersen) has shown safety and efficacy far beyond expectations.

____(short concise paragraph about what a treatment means to you. FDA doesn’t care much about the stories and the fluff from what we hear so if too long they won’t read it)_______________

Although SMA is a rare disease, it kills more babies and children under 2 years old than any other genetic disease. There is NO AVAILABLE TREATMENT for SMA. Each day that passes without a treatment leads to deterioration and in many cases, death. SMNRx (Nusinersen) has dramatically and positively improved the lives of so many SMA patients and it is time for everyone with SMA to have a chance. Witnessing the on-going functional improvements that so many of these treated patients are experiencing is unheard of in SMA.

We know that SMNRx (Nusinersen) may not provide such astounding improvements in every SMA patient, but we want to be clear that even stopping progression would be a benefit. Phase 3 placebo trials lasted well over a year and continuing placebo groups in a second Phase 3 clinical trial is clearly unethical. The progression of SMA within one year can be so dramatic that it is clear that we don’t have time to waste.

The lives of those with SMA is our only concern and we will continue to fight for their right to receive SMNRx (Nusinersen). Our petition has well over 100,000 signatures of those supporting the critical need for SMNRx (Nusinersen) to be made available for all suffering with SMA. The need is clear and our voice is loud, WE NEED TREATMENT NOW.

Sincerely,

___(name)___, ___ yr old, Type ___

Facebook: The FAST Movement
www.thefastmovement.org


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