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Shelly
  • Male
  • Darwin , northern territory
  • Australia
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  • Sanja Kogelnik
  • Alpa Khushalani
  • Ann Lucas
  • Azucena Lopez de Nava
  • Rahul Deshpande
  • Steven
  • Trinh Nguyen
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  • David
  • Deb Robins

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Shelly's Discussions

BMS ANTIMYOSTATIN TRIALS

Started this discussion. Last reply by Rahul Deshpande Mar 1, 2016. 1 Reply

Hi friendsIs there anybody participating in BMS trials.. Please share your experiences and views as I am planning to participate in the sameThanksContinue

 

Welcome, Shelly!PPMD Community Refresh Shelly commented on Annie Kennedy's blog post Advancing Targeted Therapies for Rare Diseases Act Goes Before HELP Committee "I'm planning to participate in BMS A

Latest Activity

Shelly replied to Chris's discussion Any new drugs expected next 3-5 years?
"Yes it does have the potential to treat all the boys with any gene mutation !"
Oct 31, 2016
Shelly favorited Jason Darienzo's discussion Sarepta Therapeutics shares jump on news of critic’s departure from FDA
Sep 21, 2016
Shelly commented on Pat Furlong's blog post FDA Grants Accelerated Approval to First Drug for Duchenne Muscular Dystrophy
"That's true David! Thanks Pat!"
Sep 21, 2016
Shelly favorited Pat Furlong's blog post FDA Grants Accelerated Approval to First Drug for Duchenne Muscular Dystrophy
Sep 21, 2016
Shelly favorited Jason Darienzo's discussion Heart of Bureaucratic Darkness
Aug 27, 2016
Shelly favorited PPMD's blog post PPMD Sends Letter to FDA Regarding Duchenne Therapies
Aug 13, 2016
Shelly favorited Pat Furlong's blog post PTC Therapeutics Provides Regulatory Update on Translarna™
Jul 25, 2016
Shelly replied to Dakota Ferrazzi's discussion Anyone with DMD break femur bone???
"Fighters always win!!!! God bless !!!"
Jul 9, 2016
Shelly favorited Abby Bronson's blog post PPMD Awards University of Washington Grant to Support Technology to Help Optimize Gene Therapy
Jun 10, 2016
Shelly commented on Pat Furlong's blog post BioMarin Discontinues Clinical Development of Drisapersen
"Thanks Pat for all the support!!"
Jun 1, 2016
Shelly favorited Pat Furlong's blog post BioMarin Discontinues Clinical Development of Drisapersen
Jun 1, 2016
Shelly replied to Jason Darienzo's discussion BioMarin Announces Withdrawal of Market Authorization
"It's really sad to know that the hard work of boys and families went in vain. I don't know when will our boys get a treatment option. Years and years passing by, billions and billions are spent but no treatment so far!"
May 31, 2016
Shelly favorited Buddy Cassidy's blog post Buddy's Elegy for Ben Cumbo
May 26, 2016
Shelly favorited Buddy Cassidy's blog post Buddy's Elegy for Ben Cumbo
May 26, 2016
Shelly favorited Jason Darienzo's discussion Senator Marco Rubio Calls on the FDA for accelerated approval of Eteplirsen for Duchenne
Apr 29, 2016
Shelly favorited Steven's discussion SUMMIT'S IND CLEARED BY FDA ALLOWING EXPANSION OF PhaseOut DMD, A PHASE 2 CLINICAL TRIAL OF EZUTROMID (SMT C1100), INTO THE US
Apr 29, 2016

Profile Information

About me:
Basically a teacher but now at home
About my family:
Two kids , a daughter 4 and son 7 years nine months
Name(s) of child(ren)/individual(s) with Duchenne:
Aditya rampal
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Darwin
State:
Northern Territory

Comment Wall (5 comments)

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At 10:09pm on March 1, 2016, Azucena Lopez de Nava said…
Thank you!
At 11:37pm on February 16, 2015, Deb Robins said…

Sure, my email was in one of my earlier comments. Looking forward to your post. deborah.robins@duchennefoundation.org.au   Stay loved.

At 9:56pm on February 16, 2015, Deb Robins said…

Hi Shelley, your genetic test is the next step and your local clinical will no doubt register you on our national registry: https://nmdregistry.com.au/dmd/   But meanwhile, if you don't have our Teacher's Pack or New DX pack, email me some contact details and we can mail them and you will get newsletters very occasionally from Duchenne Foundation about opportunities. We also send out emergency wallet cards like PPMD's and encourage folks to add the information into their child's eHealth profile online.  With pending approvals for treatments for approx 26% of kids, it is important to find out the mutation so that will be interesting. Connect up soon?  Best regards.

At 10:34pm on February 13, 2015, Deb Robins said…

Hi Shelly

I didn't think we had any families left in or around Darwin as the ones I used to know had moved. Please get in touch deborah.robins@duchennefoundation.org.au  and I can give you a call?  Are you on our mail list?  Best,  Deb

At 8:49pm on December 29, 2014, Trinh Nguyen said…

Glad to be your friend.

Trinh

 
 
 

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