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Polly Sundeen
  • Female
  • Tustin, California
  • United States
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Polly Sundeen is attending PPMD's event

[Upcoming Webinar] Understanding the FDA Approval of EMFLAZA™ (deflazacort) at Online Webinar - Eastern Time Zone

February 10, 2017 from 12pm to 1pm
Friday, February 10th at 12 PM EST / 9 AM PSTWe are pleased to learn that the FDA has approved EMFLAZA (deflazacort). The FDA’s approval of EMFLAZA provides options for families when making decisions about care with their providers. During this webinar, the Marathon team will provide information about EMFLAZA’s FDA-approved label, patient support services, and access to this medication.Speakers:Pat Furlong, PPMD…See More
Feb 9

Profile Information

About my family:
Mommie to Justine (21y.o.) and Cole (11y.o.)
Cole was dx with DMD in 5/2002. He has a deletion of exons 46-47.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Tustin, CA (Orange County)

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Comment Wall (26 comments)

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At 8:29pm on October 5, 2012, thomas m golf said…

my son was 7 yrs and i am lucky he is still walking if you need to call me please do my number  is 708 8782599

At 11:37am on August 14, 2010, thomas m golf said…
he gets aound very good
At 11:36am on August 14, 2010, thomas m golf said…
hi my name is tom golf my son has dmd 46 -47 and he is 8yrs and he still get very well how bad is this type of deletion
At 5:46pm on September 30, 2009, Evelyn said…
Hi Polly
This is Evelyn Nellius. we met in Ohio last week. it was nice to chat with you. I hope your visit went well. Thanks again
At 8:44pm on August 2, 2009, Char Burke said…
Hi Polly - Cole looks great - he looks so thin from his photos. What are you doing that he does not seem to be getting any weight gain or puffy face from the deflazacort? Char Burke - Will's mom in Seattle.
At 4:28pm on March 26, 2009, Jean said…
Polly - thatn you for your quick reply re: Masters. I am the grandmother, and have relayed the info. to Peyton's mother. They are on the way to Dr. as I write. Love your pics. Cole looks a lot like Peyton (same age) expecially in pics. 2,3, and 10. Love your page. God Bless, and thanks again!
At 12:15am on February 19, 2009, christine good said…
Hi POlly,
I was told you may have some good info on charitable flights to Ohio. Can you pls help me with my 1st appt there?

At 6:36pm on February 16, 2009, Gregory said…
Please join our San Francisco Bay Area Families group.

At 11:40am on February 1, 2009, Lynne Taylor said…
Hi Polly
I have just joined the deletions group. I noticed that Cole has deletions of exon 46-47. My son Ross is 14 years old and has an out of frame deletions of exon 46 & 47.
best wishes
At 1:57am on December 27, 2008, Kim Innabi said…
Hi Polly - The Eiffel Tower is done!!!! No help from me needed -good thing for that - I'm no help with anything but supplies sorting baggies! I added a picture on my page - Nicholas was so proud of himself! Talk to you soon,


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