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Shelly
- Male
- Darwin , northern territory
- Australia
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Shelly's Discussions
BMS ANTIMYOSTATIN TRIALS
Started this discussion. Last reply by Rahul Deshpande Mar 1, 2016. 1 Reply 0 Favorites
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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Sure, my email was in one of my earlier comments. Looking forward to your post. deborah.robins@duchennefoundation.org.au Stay loved.
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.
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
Glad to be your friend.
Trinh