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neeraj Male london European Union: Favorite

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Started Jun 11, 2010 0 Replies 0 Favorites

Started this discussion. Last reply by ferre Jun 7, 2010. 3 Replies 0 Favorites

Started this discussion. Last reply by Ofelia Marin Mar 9, 2010. 9 Replies 0 Favorites

About my family:: My son aran is 8 years old and has nonsense mutation that ptc124 has the potential for a treatment.our hope is he gets the drug in the 2b trial and we pray it treats him.We are desperate for every child to be 100% treated.

At 10:58pm on June 21, 2010, Vicky Singh said…: Hi... my son, Saij is also 8, and has the same nonsense mutation/stop codon as your son. We were not able to take part in the trial, but are also optimistic about the results... do you have any latest news on the continuation of the trial? Would love to connect and exchange notes with you.

Thanks,

Vicky

At 11:56pm on March 7, 2010, Tina said…: My son is 9 y/o and weighs about 70 pounds. He takes 50mg of losartan at bedtime. Hope this helps.

At 10:09am on August 25, 2008, Sharyn Thompson said…: Hi Neeraj,

We are moving to London in the next 2 months. Who is your son's doctor? Where abouts in London are you? I am trying to get as much info as I can before we arrive. We will be living in Beckenham, Kent. Maybe we can organise a UK Families group?

Cheers,
Sharyn.

At 12:11am on June 18, 2008, Jill Keenan said…: Thanks for the offer--I might take you up on the it, esp. the advice on supplements. This is all so new to me and supplements in general are foreign to me. So I need all the help I can get in that area (as well as many others!). Take care, Jill

At 9:28pm on June 11, 2008, Jill Keenan said…: I do hope all goes well with PTC124--every day and every minute counts with our boys, so I do pray that your son will start receiving the medicine soon and that it will do what it was created to do! Exciting times in the DMD world. Keep me posted! Cheers, Jill

At 12:32am on June 7, 2008, Jill Keenan said…: Just wanted to drop you a line and say hello. What part of London are you in? We lived in Woking for a couple of years and loved it and the culture there. (And we loved all the travel living there afforded us! So much to see and do.) My husband is acutally flying home from there tomorrow. He said the weather was fabulous this past week--he so wishes we were still there. We live in hot, humid Houston, Texas! We love it here but it is a little too hot in the summer months!