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Latest Activity

Nithin Dev Bandakka commented on Eileen DeLong's group Exon Deletion 3-7

"Hi Praveen, my son has been recently diagnosed with exon 5-7 deletion. Exon 3-7 is the closest group to this. Can you approve my request to join the FB group? "

Nov 2

Nithin Dev Bandakka joined Eileen DeLong's group

Exon Deletion 3-7

Connect with other families with exon deletion 3-7.

Nov 2

75 Comments 0 Favorites

Shannon Cooley joined Roxanne's group

Outliers - Intermediate between Duchenne & Becker MD

The reading frame rule holds true 90% of the time. There remains those 10% that does not fit dmd/bmd phenotype. There is a 3rd form that may be considered as an intermediate between Duchenne and Becker MD(mild DMD or severe BMD.See More

Oct 30

82 Comments 4 Favorites

Sarah Kasner posted a discussion

Birthdays and Duchenne

I'm not sure the best place to post this but here is a blog post I wrote about birthdays and what it means you have kids with Duchenne. In case it's helpful for any other parents.Don't Ever Grow Up!See More

Oct 29

0 Comments 0 Favorites

Emily Labejof and Nithin Dev Bandakka joined PPMD Community

Oct 29

Michael Kessler, Susan Wingfield Alphousns, Leslie McIntyre and 2 more joined PPMD Community

Oct 17

Leslie McIntyre favorited Angie Evans's discussion Who pays for your deflazacort?

Oct 8

Ankur Handa replied to Ankur Handa's discussion Emplaza in US

"I called Masters and they do not ship any more. Planning to get it from India as it should be possible with a US doctors prescription. "

Oct 6

Peter replied to Ankur Handa's discussion Emplaza in US

"Is it an opton to come to Europe and bring back supply for some time?"

Oct 4

Laura C. McCallum is now a member of PPMD Community

Oct 3

Welcome Them!

Ankur Handa posted a discussion

Emplaza in US

The cost of the medication is more than $10,000 for a 30 day supply. Insurance has also rejected it. So, wanted to check if there is a better way to get the deflazacort in the US if we can't get it from Emplaza?Any suggestions?See More

Sep 25

2 Comments 0 Favorites

Praveen commented on Eileen DeLong's group Exon Deletion 3-7

"All - There is a facebook group for Exon 3-7 deletion. Please join this group. https://www.facebook.com/groups/120669448584316/"

Sep 13

Eileen DeLong replied to James's discussion exons 3 - 7

"Hi, Jared is now 19 and Calvin is 22 both still walking. Seeing Dr. Wong in November. So lucky she moved closer to us since we had to stop seeing her due to insurance change. They both have problem with anxiety but doing well mostly."

Sep 13

Philip Weiss and Marsha Schattner joined PPMD Community

Sep 11

Shannon Cooley joined Eileen DeLong's group