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Shelly
  • Male
  • Darwin , northern territory
  • Australia
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Shelly's Friends

  • Jay Griffin
  • Sanja Kogelnik
  • Alpa Khushalani
  • Ann Lucas
  • Azucena Lopez de Nava
  • Rahul Deshpande
  • Steven
  • Trinh Nguyen
  • Moein
  • 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

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

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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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