Rob and Theresa Capolongo
  • Male
  • Staten Island, NY
  • United States
Share on Facebook
Share

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
  • Rosalie
  • cheryl cliff
  • Liisa Underwood
  • Pat Furlong

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

Latest Activity

Joshua's mom and Rob and Theresa Capolongo are now friends
Sep 19, 2011
Rob and Theresa Capolongo replied to maxine Strydom's discussion IDEBENONE
"The email is robcap9MM@aol.com"
Sep 19, 2011
Rob and Theresa Capolongo replied to maxine Strydom's discussion IDEBENONE
"Hi my name is Rob from NYC.  My son Michael has Duchenne and we are thinking of using Idebenone.  We would like to find out more info.  Please let us know.  Cell # 917-443-5384 and email is Robcap(mm@aol.com.  Thank you."
Sep 19, 2011
David replied to Rob and Theresa Capolongo's discussion Indebenone
"See discussion under different spelling   http://community.parentprojectmd.org/forum/topics/idebenone-2"
Aug 31, 2011
Clare Harper left a comment for Rob and Theresa Capolongo
Aug 31, 2011
Clare Harper left a comment for Rob and Theresa Capolongo
"Hi there, there is an on going discussion on idebeone at the minute,read through it,"
Aug 31, 2011
Rob and Theresa Capolongo posted discussions
Aug 31, 2011
Rob and Theresa Capolongo and Moein are now friends
Apr 10, 2011
Amrit replied to Rob and Theresa Capolongo's discussion My sons deletion
"Thanks Ofelia for making it clear for me. it is moving slow. Not sure what fast track mean? :("
Apr 3, 2011
Amrit replied to Rob and Theresa Capolongo's discussion My sons deletion
"one question 1) phase II wont complete until Feb2012, or whole clinical trial process? if i am correct this trial is fast tracked, i am just trying to understand when you to expect the drug as therapy? thanks."
Apr 2, 2011
David replied to Rob and Theresa Capolongo's discussion My sons deletion
"My son had a clinic visit few days ago, where our doc described some very positive messages coming out of Acceleron regarding ACE-031 trial in Canada. This study is very small, and only for ambulant boys. Normally his doc is very, very cautious…"
Mar 26, 2011
Trinh Nguyen replied to Rob and Theresa Capolongo's discussion My son about to start steroid treatment
"Dear Theresa and Rob, Our boy was diagnosed with DMD just in one month ago. We have the same feelings ; same pain, same fear... But our sons need strong mom and dad to be with them in this tough journey. Take care."
Mar 21, 2011
Eric thurston replied to Rob and Theresa Capolongo's discussion My sons deletion
"Hello Rob and Theresa.  Another promising compound being developed is LAM-111.  From what I understand, trials will be starting within the next 18 months."
Mar 20, 2011
Keith Van Houten replied to Rob and Theresa Capolongo's discussion My sons deletion
"Steve - I believe you are correct.  Gene therapy is not mutation specific.  It's basically trying to replace the dystrophin gene with a working copy.  The challenge has been that because of the size of the dystophin gene, they…"
Mar 19, 2011
Clare Harper replied to Rob and Theresa Capolongo's discussion My sons deletion
Mar 18, 2011
Rob and Theresa Capolongo replied to Rob and Theresa Capolongo's discussion My sons deletion
"thanks for the advice i will look more into this"
Mar 17, 2011

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)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

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

 
 
 

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service