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Paul Johnson
  • Male
  • Downingtown
  • United States
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Paul Johnson's Friends

  • Katie Mader
  • Elaine Burgess
  • Shea Holbrook
  • Nicole Herring
  • Matt O'Harver
  • lisa palm
  • Maria Cutrufello
  • Perlita & Gordy Hains
  • Connie Becker
  • Maureen Johnson
  • Thomas Hoel
  • Vonda Fox
  • Carolyn Kleppe-Collins
  • Barb Rush
  • Crissy Zitzer

My Attempt At Blogging...

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Paul Johnson's Discussions

Anyone have a successful Letter of Medical Necessity for Supplements they would share?

Started this discussion. Last reply by Jennifer Shumsky Mar 3, 2011. 3 Replies

Does anyone have a copy of a Letter of Medical Necessity they submitted to their Flexible Spending Account (or Insurance) to get reimbursed\coverage for the purchase of supplements, particularly…Continue

A little savings on Nature Made supplements

Started this discussion. Last reply by Mandy Jan 19, 2011. 2 Replies

If you're buying OTC supplements like Vitamin D, CoQ10 etc...I hadn't noticed before until today - but if you buy the brand:  Nature Made - you can enter codes off the bottles for points to redem for…Continue

Financial Planning...

Started Jul 20, 2009 0 Replies

A friend of mine passed this article along to me. It is from a magazine she subscribes to. It has some good info on it for lawyers related to financial planning for special needs children... but its…Continue

Tags: Trusts, Needs, Special, Planning, Financial

 

For Elliott & Henry

Some Important Links (Work in Progress)

Email me directly: Paul

Collection of Family and Charity Webpages relating to DMD: Websites
Collection of Physical Therapy papers and information: Page
Collection of Medical Emergency Information: Page

Darius Goes West. One Year. One Million DVDs.

Profile Information

About me:
My Name is Paul, I'm originally from Boston, Massachusetts and currently reside in Pennsylvania about 30 minutes west of Philadelphia. I'm a Quality Assurance Engineer for a CAD software company.
About my family:
My Wife, Joanna and I have been married for 11 years and have two boys; Elliott & Henry. Both boys were diagnosed with Duchenne MD in the summer of 2007.
Elliott participated in the PTC124(Ataluren) Phase 2b clinical trial down at CHoP and is continuing in the extension study.
Name(s) of child(ren)/individual(s) with Duchenne:
Elliott (8) & Henry (5)
Age(s) of child(ren)/individual(s) with Duchenne:
7-12, 13-18
City:
Downingtown, PA

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Comment Wall (41 comments)

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At 9:28pm on December 2, 2011, Wyatt's Mommy, Melissa said…

They are so sweet.  Just darling.

At 7:40am on June 13, 2010, Elaine Burgess said…
Hello again--As I said, I am very new at this and not sure what I am doing actually. But yes, I celebrated a birthday (60!) on Thursday. We celebrated by spending a few days at Cape May, a beautiful place and beautiful weather. I'll stop by to see you and to wish Henry a belated Happy Birthday.

Elaine
At 7:37am on June 13, 2010, Elaine Burgess said…
Hello Paul, Joanna and sons,

I joined about a week ago to read some of the blogs. This is my first attempt at social networking. Nice to see all of you in person and on the computer.

Elaine
At 12:04pm on September 24, 2009, lisa palm said…
Hi Paul,
We do see Dr. Finkel at CHOP, we are taking Ryan, 4 for a steroid check-up next week. Our 2 yr old Jack has DMD also, but not the dramatic symptoms Ryan had at this age. Thanks for contacting me, hard enough having one child with this, but to have 2 boys with it is very hard.
I JUST realized you are the run in Kennet Square we are going to do, With about 20 or so of our friends and family going with us. I have been in contact with several families but have yet to meet any, and I am looking forward to doing so.
I was born in Boston, we lived in Abington until I was 10, I still slip back into my accent!
At 2:23pm on September 9, 2009, Carolyn Kleppe-Collins said…
Hi Paul
Thanks for the note. I think that I am still in denial about the whole thing. I did get a chance to spend a week with my sister in law and their family this summer and it was hard. Keelan, like your Henry, will be 2 this month and I am just so sad that he will not have the opportunity to experience things most parents take for granted. His parents get so upset when he falls down and take it on as a personal failure that they were not watching him enough. I think they also feel as though no one else but them can watch him close enough. They are under a lot of stress and I just wish I could help them, but don't know how.

Thanks for thinking of me. I hope you and your family are well and I wish you all the best
Carolyn
 
 
 

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