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Please Tell the FDA to Stop Postponing Their Decision re: Eteplirsen- Children Will Continue to Die in the Meantime


Health & Wellness  (tags: DMD, death, children, Duchenne, FDA, cure, research, government, petition )

Lauren
- 2064 days ago - change.org
Please take a second to sign this petition. DMD is fatal, but a new (& safe!) drug could be a cure! The FDA have reversed their previous promise based on a completely different drug. Children will continue to die if this decision continues to be postponed



   

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Comments

Animae C (508)
Sunday November 24, 2013, 4:35 am
You have already signed the petition
"FDA: Please accept Sareptaís New Drug Application (NDA) for Eteplirsen"
Signed
with 4 supporters
2,996 NEEDED
 

Animae C (508)
Sunday November 24, 2013, 5:11 am
just sending myself a link
 

Past Member (0)
Sunday November 24, 2013, 5:23 am
Signed and noted.
5 supporters.
2,995 NEEDED
 

Gloria picchetti (304)
Sunday November 24, 2013, 5:23 am
Signed.
 

kate K (481)
Sunday November 24, 2013, 5:23 am
noted and signed thank you Ani
 

John Holton (344)
Sunday November 24, 2013, 5:25 am
S and N
 

Bridget Robertson (106)
Sunday November 24, 2013, 5:29 am
Signed and noted.
 

Krish Away (43)
Sunday November 24, 2013, 5:31 am
Signed
with 9 supporters
2,991 NEEDED
 

Past Member (0)
Sunday November 24, 2013, 5:32 am
NS&S. Signed with 9 supporters Good luck, Lauren. Thanks, Ani, for the forward.
 

Nicole W (646)
Sunday November 24, 2013, 5:39 am
ty Lauren and AniMaeChi for forwarding
 

Krish Away (43)
Sunday November 24, 2013, 5:41 am
Thx Lauren for giving us a chance to help.. thx Ani for the fwd
 

(0)
Sunday November 24, 2013, 5:46 am
The failure of drisapersen in a Phase 3 trial for DMD (Duchenne muscular dystrophy) was a disappointment. Prosensa (RNA) and GlaxoSmithKline's (GSK) exon-skipping drug has failed to produce statistically significant differences in tests of walking distance or motor function between trial participants treated with the drug and those treated with a placebo.
In the meantime new ideas are springing up for the treatment of DMD.

Summit plc, a UK company, listed on the London Stock Exchange, has a utrophin modulation program with the idea of developing pills to increase the production of a protein called utrophin. The approach originates from the research of Professor Kay Davies at Oxford University.

Utrophin is a protein that is naturally occurring and functionally similar to the missing dystrophin protein and may be able to replace it.

Thanks for forwarding AniMaeChi, I won't sign as these companies test on animals, which is against my beliefs xx
 

Birgit W (160)
Sunday November 24, 2013, 5:46 am
Signed.
 

Millie O'Connor (155)
Sunday November 24, 2013, 5:54 am
S & N. Thanks, Lauren for posting. Thanks, AniMaeChi for forwarding.
 

Sheryl G (359)
Sunday November 24, 2013, 5:57 am
Signed. Thanks AniMae on forwarding.
 

Victoria Oakey (124)
Sunday November 24, 2013, 6:04 am
Noted and signed. Good luck.
 

divergent r (309)
Sunday November 24, 2013, 6:34 am
Between the devil and the deep
Signed, thanks Ani
I understand the urgency, why don't they?
Right, they are heartless drug cartels with a license
 

John De Avalon (36)
Sunday November 24, 2013, 6:40 am
Gladly signed!
 

Ljiljana Milic (115)
Sunday November 24, 2013, 6:46 am
Signed
2,980 NEEDED
& Thank you Lauren for posting. Thanks and AniMaeChi for forwarding
 

Daniel Partlow (179)
Sunday November 24, 2013, 7:02 am
S&N
 

Giana Peranio Paz (398)
Sunday November 24, 2013, 7:17 am
Noted and signed, thanks Lauren.
 

Past Member (0)
Sunday November 24, 2013, 7:28 am
Thank you for signing the petition "FDA: Please accept Sareptaís New Drug Application (NDA) for Eteplirsen"
Thanks Lauren and AMC for the forward. Shared on FB.
 

Angelika R (143)
Sunday November 24, 2013, 7:29 am
Signed! thx. (20 supporters?????) Shows once again how FDA is owned by BigPharma, what a damn shame even if no surprise. As for Marie's statement above, ok, we all respect this, at least I do, however, sometimes one just needs to accept different priorities for exception.
 

Animae C (508)
Sunday November 24, 2013, 7:32 am
Thank you Angelika, it was only 4 when i got here!
 

Kathleen R (192)
Sunday November 24, 2013, 8:05 am
Signed and noted. 22 supporters now. Thank you Lauren and AniMae
 

Sherri Martin (78)
Sunday November 24, 2013, 8:11 am
Noted, Signed and Shared to Facebook
 

Barb SiteIssues V (202)
Sunday November 24, 2013, 8:51 am
Signed & Noted, Thank you
 

Past Member (0)
Sunday November 24, 2013, 8:53 am
signed and noted.
 

Ondine J (134)
Sunday November 24, 2013, 8:58 am
Noted and signed of course. Thanks Lauren and AniMaeChi for sending the message.
 

. (0)
Sunday November 24, 2013, 9:07 am
Done
 

Lisa Neste (202)
Sunday November 24, 2013, 9:16 am
Signed, thanks!
 

Ed Site Issues V (198)
Sunday November 24, 2013, 9:19 am
S&N, Thanks
 

Franshisca Dearmas (89)
Sunday November 24, 2013, 9:42 am
Noted and signed. TY Lauren
 

. (0)
Sunday November 24, 2013, 9:45 am
signed#39
 

. (0)
Sunday November 24, 2013, 9:48 am
Signed and Noted.
 

Frances Darcy (92)
Sunday November 24, 2013, 9:52 am
signed and will share
 

Michela M (3964)
Sunday November 24, 2013, 9:52 am
S&N
 

Ann Welton (230)
Sunday November 24, 2013, 9:53 am
Noted, signed and shared on facebook. Thank you Lauren for posting and AniMaeChi for sharing.
 

Jane Williams (165)
Sunday November 24, 2013, 9:53 am
SIGNED AND NOTED
 

MmAway M (520)
Sunday November 24, 2013, 10:15 am
Thank you AniMae for the note on this> Signed, but hit the wrong button and unchecked the box that said name displayed. Just didn't want to get a ton of mail in my box and unchecked wrong one S&N
 

Rhonda W (376)
Sunday November 24, 2013, 10:48 am
all signed and noted
 

Charmaine Shannon (38)
Sunday November 24, 2013, 10:56 am
Caught between GOOD and EVIL.......These little children need OUR HELP....BUT....These Companies according to Info Marie has TESTS on ANIMALS.......You have to Make your Own Decisions !!!! I am a MOM with an only child and if he were SICK I would cross the EARTH to Save HIM so I HAD TO SIGN HOWEVER My Heart is :BREAKING: knowing that these tests are being done on OUR PRECIOUS ANIMALS and also knowing that this is a thing of the PAST !!!! These tests CAN BE DONE using other methods !!!! RIGHT NOW I am in "TEARS"........Thank-You.......
 

Barbara Y (47)
Sunday November 24, 2013, 11:06 am
Signed & Noted! Thanks for sharing AniMae.
 

Terrie Williams (798)
Sunday November 24, 2013, 11:13 am
Signed
2,951 NEEDED
S/S/N
 

Past Member (0)
Sunday November 24, 2013, 11:31 am
Signed-thx Lauren
 

Laurie H (818)
Sunday November 24, 2013, 11:36 am
Signed & Shared, Thanks Lauren & Frances for sending~
 

Annemie O (153)
Sunday November 24, 2013, 12:22 pm
N & S
 

john byrne (50)
Sunday November 24, 2013, 1:01 pm


SIGNED.
 

Mary T (356)
Sunday November 24, 2013, 1:06 pm
Signed with 58 supporters 2,942 NEEDED - thank you Lauren & Ed for forwarding
 

Darlene W (289)
Sunday November 24, 2013, 2:15 pm
Noted and signed--bless all who care.
 

. (3)
Sunday November 24, 2013, 2:18 pm
n & s
 

Michael O (176)
Sunday November 24, 2013, 2:32 pm
Noted. Thanks Lauren!
 

Ruth M (235)
Sunday November 24, 2013, 2:33 pm
Done thanks AniMae
 

Athena F (131)
Sunday November 24, 2013, 3:17 pm
signed, noted, thanks
 

milca V (79)
Sunday November 24, 2013, 3:20 pm
noted... my signature never goes through any change.org petition for some reason.. ?...
 

Allen O (195)
Sunday November 24, 2013, 6:45 pm
signed
 

Constance F (418)
Sunday November 24, 2013, 7:33 pm
signed / shared
Signed
with 81 supporters
 

Vicky P (476)
Sunday November 24, 2013, 8:12 pm
noted, signed
 

Lynn Pascente (141)
Sunday November 24, 2013, 8:22 pm
Signed & shared on FB
Thanks Lauren & AniMae for the forward!
 

Nena G (39)
Sunday November 24, 2013, 9:27 pm
Signed and noted. Thanks AniMaeChi and Lauren.
 

Frans Badenhorst (582)
Sunday November 24, 2013, 9:44 pm
Signed
2,914 NEEDED
 

William Barratt (49)
Monday November 25, 2013, 1:49 am
Signed
 

Past Member (0)
Monday November 25, 2013, 1:49 am
Also signed.
 

Animae C (508)
Monday November 25, 2013, 2:34 am
Only 92 supporters!

Can anyone post this on f/b or twit?
 

Past Member (0)
Monday November 25, 2013, 4:31 am
I donít know if this is helpful to anyone, but of the companies that Marie mentioned in her post, none of them make the drug mentioned in this petition (though I donít know whether by Ďthese companiesí Marie meant drug companies in general, apologies if that is so). That said, I donít know whether the company that does make the drug tests on animals, but if this provides solace to anyone; at least we know that this particular drug wonít be tested on animals again (if it has been before), particularly if the NDA is granted. As I say, I donít know if this is helpful or not to people struggling, but I thought Iíd mention it just in case :)
 

Rhonda B (99)
Monday November 25, 2013, 4:52 am
Thank You!
 

John Holton (344)
Monday November 25, 2013, 5:22 am
S and N
 

Lauren S (26)
Monday November 25, 2013, 5:29 am
Wow. Iím overwhelmed! Yesterday I logged off Care2 with 4 signatures on my petition (one of them being mine!) and Iíve just logged on to see this. Thank you to everyone who has signed this petition- I am incredibly grateful for your kindness! And an extra special thank you to those who have shared it as well; your generosity is so appreciated
 

Lauren S (26)
Monday November 25, 2013, 5:30 am
... I never expected so many people on Care2 to note and sign this, and thatís thanks in no small part to my dear friend Ani Mae and for that I thank her so much!

Thank you again to everybody who has taken the time to sign and share this petition; I canít express how grateful I am to you all! I know thereís a HUGE way still to go and more signatures are desperately needed, but I am so lucky to be part of this community and to know people as wonderful as Ani Mae.

Thank you! Thank you! Thank you! :D
 

Animae C (508)
Monday November 25, 2013, 6:01 am
Thank YOU Lauren, it's what we're here for.
Just wish we could get more signatures, we are stuck on only 94.

PLEASE everyone share with your friends & post on f/b & twit
 

Thomas P (275)
Monday November 25, 2013, 9:07 am
Noted and signed...thanks and thanks AniMae for the forward.
 

Past Member (0)
Monday November 25, 2013, 10:03 am
Signed. Thank You, Lauren for this~ ~ & Thank You, AneMaeChi for forwarding~~
 

Edwin M (346)
Monday November 25, 2013, 2:13 pm
Signed, thank you Lauren and thank you AniMaeChi for the forward
 

Monique Pouchet (236)
Monday November 25, 2013, 4:09 pm
Signed, thanks!
 

Lauren S (26)
Monday November 25, 2013, 7:27 pm
I've just been informed that the petition targets only receive an email when the signer comments whilst they're signing the petition! Would it be possible for all future signers to put something in the box which says, 'Why is this important to you?'? Even if it's just copying something from the petition text or 'because children are dying' or something even shorter! I would really appreciate it; I get the feeling the recipients won't care half as much if their inboxes aren't flooded with emails!!
Thanks again everyone
 

Lauren S (26)
Monday November 25, 2013, 7:32 pm
I'm not sure if previous signers went back and posted a comment whether that would also send an email, but it's worth a try if anyone's interested? I'll let you know if any emails get sent!
 

Animae C (508)
Monday November 25, 2013, 8:03 pm
O i didn't know that Lauren!
Is that just for this petition or is it like that with all change.org petitions?

Waiting on your response as to posting a comment after signing.
 

Past Member (0)
Monday November 25, 2013, 10:38 pm
Signed and noted. Thank you for sharing Lauren and thank you for the forward Ani.
 

Candy L (473)
Monday November 25, 2013, 11:14 pm
SIgned & Tweeted, Thanks Sharron for sharing, & Lauren for posting
 

Veselin Varbanov (23)
Tuesday November 26, 2013, 12:37 am
Signed and noted! thanks
 

Yvonne F (181)
Tuesday November 26, 2013, 3:28 am
Horrible!!! So signed!!! Thanks Lauren
 

Lauren S (26)
Tuesday November 26, 2013, 5:13 am
Hi Ani Mae,
I'm not sure- the person who sent me the information said it's for all change.org petitions. I've temporarily put myself of the recipients/targets list to see what happens. Change.org sent an email saying 'you'll receive an email each time a signer leaves a comment explaining why he or she is signing. You'll also receive periodic updates about the petition's status.' but I haven't received an email since, regardless of whether the person left a comment or not :/ So I'm not sure...
I guess it can't hurt to leave a comment, but I'm not convinced that they only get emails when you comment!
... but then I don't know why I haven't received a single email as a target since the first. Very confused >.<
 

Animae C (508)
Tuesday November 26, 2013, 5:37 am
Lauren, check your PM's, i sent you something a friend suggested.
 

Lauren S (26)
Tuesday November 26, 2013, 5:48 am
Thanks Ani Mae! So sorry it took me so long to reply- I'm trying to sort through 115 unread messages!! :D
xxx
 

Animae C (508)
Tuesday November 26, 2013, 6:01 am
It's OK i'm sifting through 400+ : )
 

Lauren S (26)
Tuesday November 26, 2013, 6:04 am
Haha, you're much more talented than I! ;)
 

Animae C (508)
Tuesday November 26, 2013, 6:07 am
and square eyed! LOL!
 

. (0)
Tuesday November 26, 2013, 6:53 am
signed
 

Winn Adams (179)
Tuesday November 26, 2013, 7:16 am
Signed
 

Maria S (95)
Tuesday November 26, 2013, 7:19 am
Thank you for signing the petition "FDA: Please accept Sareptaís New Drug Application (NDA) for Eteplirsen"

Thanks Lauren
Signed

with 122 supporters

2,878 NEEDED
 

Cyn F (137)
Tuesday November 26, 2013, 8:36 am
Done...thank you AniMae and Lauren.
 

Laetitia schartner (171)
Tuesday November 26, 2013, 1:00 pm
signed, noted
 

TRISH GEIDEL (192)
Wednesday November 27, 2013, 5:23 am
SIGNED @ # 135 ! SHARED, FACEBOOK TOO !

THANX ELIZABETH, UR COMMENTS HELPED ME DECIDE, ;
I WAS STRUGGLING, BUT THEN, WHEN ARE DRUG COMPANIES,
GOING TO STOP WASTING TAX PAYERS MONEY, CAUSING PAIN
& SUFFERING, TO ANIMALS, WHEN THEY DON'T NEED TO ???
 

Lauren S (26)
Wednesday November 27, 2013, 6:35 am
Just thought I'd post a link to the C2 news story about sending a quick email to the FDA about this, in case any signers of this petition were interested:
http://www.care2.com/news/member/950838295/3678342
You can click the link on the C2NN article and skip down to 'PLEASE HELP' or read the 1st and 3rd comments on the news story, whichever's easiest :)

It really does only take a few seconds!
Thank you again everyone!
 

(0)
Wednesday November 27, 2013, 8:42 am
Signed. I hope these children get to take this drug. They all have a grim prognosis, and nothing to lose. Very sad. I think it is all about the almighty $$$. Just saying...
 

. (0)
Wednesday November 27, 2013, 9:54 am
Signed and noted, going back to sign with all my email addresses.
 

sylvie C (46)
Wednesday November 27, 2013, 3:50 pm
Done, thank you
 

Rhonda B (99)
Sunday December 22, 2013, 1:40 pm
signed!
 

Helga Kordjukova (161)
Thursday April 2, 2015, 4:26 pm
Signed
 
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