Hi Evrim. My apologies. I've not been on PPMD for a while now. Have you moved to Singapore?Do feel free to call me on my handphone +65 81338653. Thanks. Anitha
Hey Evrim, always happy to chat with other mums. And especially other Duchenne families in Singapore. I'm finding them not as open here, and so find it helpful to come to PPMD. Please let us know how best we can help.
Hi Evrim, so sorry to hear about your son!!! He needs exon 50 skipped and AVI is working on a PPMO for that. Charley, from Charley's Fund has the same mutation so they invested in it. You might be aware about some toxicity problems at some dose levels. Not sure what AVI's plans are. Why don't you email Tracy (Charley's mom)? She should have more details.
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Cheers, adele