Rob and Theresa Capolongo
  • Male
  • Staten Island, NY
  • United States
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Rob and Theresa Capolongo's Friends

  • Nancy DiDomenico
  • Andrea Cleary
  • amit gupta
  • Moein
  • Joanne Perrina
  • JoAnne Powell
  • Dana Edwards
  • Gloria Caballero Thompson
  • Joshua's mom
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Rob and Theresa Capolongo's Discussions

Indebenone

Started Aug 31, 2011 0 Replies

Is anyone using Indebenone.  My son is 5 and we were thinking of starting him on this. Any advice...

Indebenone

Started this discussion. Last reply by David Aug 31, 2011. 1 Reply

NY City family here with a 5 year old with Duchenne.  Is anyone using Indebenone.  I know it is in clinincal trial at Chop.  We were thinking of starting it.  Any advice will be appreciated.

My sons deletion

Started this discussion. Last reply by Ofelia Marin Apr 3, 2011. 18 Replies

My sons is 4 yrs 9 months. His deletion is big (3 to 43).  Before knowing the deletion I was encouraged about exon skipping.  I asked Dr Wilton from Australia if his deletion could be helped, he said…Continue

My son about to start steroid treatment

Started this discussion. Last reply by amit gupta Feb 25, 2011. 3 Replies

Our 4 year old son was diagnosed with Duchenne in November 2010 (Deletion 3 to 43).  Under the care of Dr. Wong we are waiting for the results of a muscle biopsy to see the correct dose of steroid…Continue

 

Rob and Theresa Capolongo's Page

Profile Information

About me:
Parents of a child with Duchenne
Name(s) of child(ren)/individual(s) with Duchenne:
Rob
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
STATEN ISLAND, NY

Comment Wall (3 comments)

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At 7:22am on August 31, 2011, Clare Harper said…
At 7:21am on August 31, 2011, Clare Harper said…

Hi there,

there is an on going discussion on idebeone at the minute,read through it,

At 8:05am on March 14, 2011, Nancy DiDomenico said…

 Hi Rob and Theresa,

I'm so sorry to hear about your son. It breaks my heart knowing another family is in affected by this. It would be a pleasure to talk with you. My email is Ladynbear@aol.com.

God bless you!

Nancy

 
 
 

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