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Please Release a Life-Saving Drug to Children Dying From DMD! [Deadline: 29 March 2014]


Health & Wellness  (tags: FDA, DMD, death, children, disease, treatment, deadline, FDASIA )

Lauren
- 234 days ago - petitions.whitehouse.gov
DMD is fatal but a new drug could finally offer a treatment! Please sign this petition to get the FDA to follow the FDASIA rules & release this drug to the children dying from DMD. 100,000 signatures are needed before this closes on 29 March, please help!



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Comments

Debbie Williamson (270)
Monday March 3, 2014, 7:06 am
Signed and shared. Thanks, Lauren.
 

Natasha Salgado (542)
Monday March 3, 2014, 8:49 am
Signed-thx Lauren
 

AniMae Chi (414)
Monday March 3, 2014, 12:37 pm
SIGNED
Total signatures on this petition 2,677

 

Lauren S. (28)
Tuesday March 4, 2014, 1:17 pm
'If FDA grants Accelerated Approval, Eteplirsen will be available by the end of the year. 13% of boys with Duchenne can benefit from this drug. My son is not in that group, but the company plans to develop additional new medicines very similar to Eteplirsen once the regulatory path for this first drug is clear. If FDA grants accelerated approval for Eteplirsen, the other drugs will get underway quickly and treatments will be developed for 85% of boys with Duchenne within the next several years. My son will live.

If FDA requires business as usual- a full phase 3 trial- it means no access to this therapy until 2018. Thatís a 4-year delay for the kids who can benefit from this drug. Four years is too late to save Jettís life. Four years is too late to keep Aidan out of a permanent wheelchair. Four years is too late for every boy when the data we already have show that the drug is safe and effective. And it will be a decade or more before my own son sees a treatment. My son will likely die.'

Source: http://www.charleysfund.org/blog/what-i-said-to-congress-today/
 

Charmaine Shannon (43)
Tuesday March 4, 2014, 9:22 pm
Noted, Signed and Shared !! Thank-You, AniMae for the FWD !!
 

Mary T. (308)
Tuesday March 4, 2014, 10:01 pm
Thank you Lauren and AniMae Chi for forwarding - signed, noted & shared
 

. (0)
Tuesday March 4, 2014, 10:27 pm
Thanks Lauren & to Ani for the pass on - created an account & signed.
 

Barbara F. (55)
Tuesday March 4, 2014, 10:50 pm
Signed & Noted, TY AniMae!
 

Joan McAllister (1083)
Tuesday March 4, 2014, 11:00 pm
N & S. Thanks Lauren
 

Ljiljana Milic (100)
Tuesday March 4, 2014, 11:22 pm
Signed & Thank you Lauren for posting and AniMaeChi for forwarding
 

john byrne (50)
Tuesday March 4, 2014, 11:50 pm


Signed& noted
 

Pogle S. (88)
Tuesday March 4, 2014, 11:57 pm
Noted! Non USA residents not allowed :-(
 

Franck R. (54)
Wednesday March 5, 2014, 12:05 am
Noted & signed
 

Aud nordby (718)
Wednesday March 5, 2014, 12:12 am
noted
 

Robert O. (12)
Wednesday March 5, 2014, 12:18 am
Thank you Lauren.
 

Dimitris Dallis (2)
Wednesday March 5, 2014, 2:43 am
I believe I did it. I open that account...
 

Ruth Ann W. (208)
Wednesday March 5, 2014, 3:18 am
S&N. Thank you for letting us know. We need a tremendous amount of signatures still.
 

John Holton (363)
Wednesday March 5, 2014, 3:42 am
S and N
 

Birgit W. (147)
Wednesday March 5, 2014, 3:59 am
Noted.
 

Chrissie H. (20)
Wednesday March 5, 2014, 4:38 am
Noted. Live in UK so unable to sign but good luck with the petition.
 

Dandelion G. (380)
Wednesday March 5, 2014, 5:00 am
Previously signed from private email. Good for you for posting this.
 

Allan Yorkowitz (446)
Wednesday March 5, 2014, 5:25 am
thanks
 

Lauren S. (28)
Wednesday March 5, 2014, 5:34 am
Thank you to everyone signing so far!
I am a non-US citizen and managed to sign the petition, so I'm not sure what's happening for those who can't :/
It might be because you don't actually have to enter your zip code (it's optional), so maybe people could try that and it would work like it did for me?
 

NicoleAWAY W. (634)
Wednesday March 5, 2014, 6:38 am
ty Lauren for posting and AniMaeChi for forwarding
 

Bridget Robertson (106)
Wednesday March 5, 2014, 6:56 am
Noted and signed. Thank you for the forward AniMae Chi.
 

Mitchell D. (129)
Wednesday March 5, 2014, 7:12 am
S and N, #6365, thanks.
 

Angelika R. (142)
Wednesday March 5, 2014, 7:18 am
WH petitions ARE INDEED OPEN TO ALL NATIONALITIES!

Signatures needed by March 29, 2014 to reach goal of 100,000
93,626
Total signatures on this petition
6,374
You've signed this petition
thx Lauren and good luck ( realisticly, little hope though to ever reach the threshold and /or change FDA).
Previously, all emails to FDA officials were in vain, came back with auto replies and we all know the FDA is bought by special interests, big Pharma etc..
 

Pat B. (354)
Wednesday March 5, 2014, 7:21 am
Thank you for this, signed. TY, AniMae for FW.
 

Patrick Donovan (319)
Wednesday March 5, 2014, 8:18 am
Thank you for the AniMae for the forward and thank you Lauren for the post. I was on the WH site yesterday but had not seen this petition.
 

Ingrid A. (531)
Wednesday March 5, 2014, 8:27 am
Done
 

daryl bishop (314)
Wednesday March 5, 2014, 8:38 am
tried to log into my act to whitehouse and it would not take it. i am sorry
 

Lisa sick Windsor (154)
Wednesday March 5, 2014, 9:23 am
ty Lauren for posting and AniMaeChi for forwarding
 

Ed V. (180)
Wednesday March 5, 2014, 10:01 am
S&N, Thanks
 

Dianne Lynn Eakin (731)
Wednesday March 5, 2014, 10:24 am

Signatures needed by March 29, 2014 to reach goal of 100,000
93,213
Total signatures on this petition
6,787
noted,tweeted,shared,fb-shared--ty
 

Jeaneen A. (146)
Wednesday March 5, 2014, 10:51 am
S+N
 

Julie E. (364)
Wednesday March 5, 2014, 11:12 am
Noted, signed and shared.
 

Evelyn B. (48)
Wednesday March 5, 2014, 12:02 pm
Non-US residents excluded :(
Understandable, but frustrating!!
 

Mandi T. (429)
Wednesday March 5, 2014, 12:06 pm
Signed
 

Nils Anders Lunde (548)
Wednesday March 5, 2014, 12:19 pm
N&S
 

Kamia T. (72)
Wednesday March 5, 2014, 12:49 pm
Noted and signed. The FDA never fails to amaze me. They will rush harmful drugs to production so that Big Pharma can begin making their huge profits, but refuse to release other drugs that could really save lives. Incredible!
 

Maria S. (102)
Wednesday March 5, 2014, 1:00 pm
Noted! Unfortunately not allowed to sign. Non US residents excluded.
Good luck on this important petition & AniMae for forwarding.
 

Rose NoFWDSPLZ (275)
Wednesday March 5, 2014, 2:26 pm
SO SIGNED
 

Lois Jordan (56)
Wednesday March 5, 2014, 2:30 pm
Signed (7317 signatures). Noted. Thanks, Lauren.
 

anonymous X. (93)
Wednesday March 5, 2014, 3:14 pm
Thanks
 

Annemie O. (157)
Wednesday March 5, 2014, 3:46 pm
N & S
 

S J. (119)
Wednesday March 5, 2014, 4:35 pm
thanks
 

Allen O. (186)
Wednesday March 5, 2014, 5:50 pm
Signed
 

Heidi Aubrey (5)
Wednesday March 5, 2014, 7:06 pm
I don't have enough information about the drug in question.

If the author of the petition would provide that or a link to the research for it, I may have voted.

It is simply far too vague. Little more than a "Please Sign" sign.
 

Edith B. (141)
Wednesday March 5, 2014, 9:12 pm
A White house acct is required. I have one, but don't have my password with me. Shared though.
 

sharon wardle (105)
Wednesday March 5, 2014, 11:28 pm
Signed, shared & noted ~ Thanks
 

No Mails H. (176)
Wednesday March 5, 2014, 11:29 pm
Noted!
 

Lauren S. (28)
Thursday March 6, 2014, 2:33 am
Iíve sent you a message Heidi, but you were welcome to message me if you wanted more information! Itís just that Iíve posted about eteplirsen 4 or 5 times on Care2 already and didnít want to clog it up with more repetitions of the same information! :)
You could also click on my name and youíll see news stories about eteplirsen, or click on my profile. And Iím sure a quick internet search would have turned up results if you were concerned, but here are some links anyway:
http://www.change.org/en-GB/petitions/fda-please-accept-sarepta-s-new-drug-application-nda-for-eteplirsen
(there have been no side effects/safety issues) ĎÖthe risk is a minimal and tolerable one compared to the certain pediatric deaths and losses of ambulation that will occur if you require several more years of study before approving this drug.í
http://www.charleysfund.org/blog/1427/
http://www.charleysfund.org/blog/what-i-said-to-congress-today/ (as in my first comment)
http://jettfoundation.org/uncategorized/mindy-leffler-what-i-said-to-congress/
http://jettfoundation.org/blog/what-i-said-to-congress-today/

I donít think youíll be able to access any journal articles unless you have a paid subscription to them as I donít think the eteplirsen literature is published in open access journals, but youíre welcome to research that if you want to because Iím not certain!
Hope this helps!
Warm wishes,
Lauren
 

Barbara V. (178)
Thursday March 6, 2014, 2:48 am
Signed & Noted, Thank you

 

Lady Seastar LynnCarin (475)
Thursday March 6, 2014, 3:37 am
A whitehouse.gov account is required to sign Petitions.
 

Evelyn B. (48)
Thursday March 6, 2014, 8:38 am
Signed - my postcode worked for whitehouse account tho' not US ????!!!!
 

Sherri Martin (126)
Thursday March 6, 2014, 9:54 am
Noted, Signed and shared to Facebook
 

Ann W. (237)
Thursday March 6, 2014, 11:39 am
Noted, signed and shared om facebook. Many thanks to Lauren for posting and to AniMae for sharing.
 

Sara W. (110)
Thursday March 6, 2014, 12:56 pm
Signed. Thanks!
 

Terrie Williams (774)
Thursday March 6, 2014, 1:15 pm
Thank you for signing this petition
March 06, 2014
Signature # 9,271
SSN
 

Lynn Juozilaitis (141)
Saturday March 8, 2014, 5:48 pm
Thanks Lauren! Signed, noted & posted on FB
 

Ben B. (39)
Saturday March 8, 2014, 6:22 pm
Signed & noted, thank you Lauren for posting.
 

Wendy H. (47)
Saturday March 8, 2014, 9:35 pm
Thank you, Ondine
 

kate awayvacation (480)
Sunday March 9, 2014, 4:49 am
N&S
 

Ruth Ann W. (208)
Sunday March 9, 2014, 4:56 am
Done. Wishing I could have dine it again.
 

Past Member (0)
Sunday March 9, 2014, 5:40 am
Thank you:)
 

Allen O. (186)
Sunday March 9, 2014, 6:10 am
A. O.

Minneapolis, MN
March 05, 2014
Signature # 7,708
 

Allen O. (186)
Sunday March 9, 2014, 6:11 am
A. O.

Minneapolis, MN
March 05, 2014
Signature # 7,708
 

Shirley S. (175)
Sunday March 9, 2014, 7:31 am
noted
 

gabriele jefferson (148)
Sunday March 9, 2014, 10:42 am
noted,signed,shared on fb,twitter,google.thx.
 

Linda Moore (223)
Sunday March 9, 2014, 1:21 pm
Thx, noted, signed, tweeted
 

LaurenSICK Kozen (159)
Sunday March 9, 2014, 3:36 pm
Noted & Signed. Thanks Lauren.
 

Lisa Zarafonetis (177)
Monday March 10, 2014, 12:00 am
SIGNED & SHARED
 

Sa D. (45)
Monday March 10, 2014, 12:41 am
Thankyou Lauren
Signed, shared & noted.
I'm digressing but why is medicine & medical services so expensive in US unlike anywhere else in the world??
 

Judy T. (213)
Monday March 10, 2014, 4:54 am
Signed. Thank you, Lauren.
 

Sam Dyson (58)
Monday March 10, 2014, 5:38 am
S. D.

March 10, 2014
Signature # 15,465
 

Sam Dyson (58)
Monday March 10, 2014, 5:39 am
Oh...NON-US citizens can open an account and sign these... I'm an Aussie, and I just did. :-)
 

Michela m. (3960)
Monday March 10, 2014, 6:17 am
S&N
I'm Italian but I SIGNED anyway!!!
 

Elizabeth Nipper (70)
Sunday March 16, 2014, 9:35 pm
Noted, signed, and shared. best wishes Lauren.
 

Yvonne F. (177)
Monday March 17, 2014, 7:54 am
So signed!!!! Thanks Lauren
 

Apolonia Pl (400)
Sunday March 23, 2014, 6:10 am
N&S...
 

Rhonda B. (100)
Tuesday March 25, 2014, 8:03 am
Noted & signed.
 

Sai Krishna G. (1)
Friday April 11, 2014, 9:50 pm

S. G.

April 12, 2014
Signature # 105,946

Looks like petition reached its threshold limit
March 29, 2014
Signature # 105,050

I am from India, but I was able to sign whitehouse.gov petition. Can we know the response for this petition? Yes/No etc?
 

Nancy C. (797)
Wednesday May 7, 2014, 8:44 pm
106277...still open
 

Nancy C. (797)
Wednesday May 7, 2014, 8:45 pm
signed 4/16...ty!
 
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