Jen Portnoy
  • 47, Female
  • New York
  • United States
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Jen Portnoy's Friends

  • Cheryl Markey
  • Jamie Romito
  • Anastasia Portnoy
  • Katherine M. Reynoldson
  • Lynn Bartels
  • Pat Moeschen
  • Rebecca Saulsbury
  • Rosalie
  • Colin McKenzie
  • Mindy
  • Jill Castle
  • Christine Piacentino
  • Kristin Hiatt
  • Karen Barnett
  • Alison Willis

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Profile Information

About me:
Shortly after our son Javier was diagnosed with Duchenne in 2007, we established Hope for Javier.

Hope for Javier’s mission is to create hope where none (yet) exists. Through fundraising and raising awareness, Hope for Javier is working to change the outcome for boys diagnosed with this devastating disease in two ways:

· By funding translational research – research that focuses on moving science from the lab into human clinical trials.

· By funding initiatives that make improvements to the standard of care, the quality of life and the general outlook for all those diagnosed.
About my family:
This diagnosis has affected not just Javier, not just us, his parents, but every member of our family and group of friends, all of whom work hard to make sure Javier enjoys his every day and remains happy and unaware of his illness.
Name(s) of child(ren)/individual(s) with Duchenne:
Javier
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
New York

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Comment Wall (8 comments)

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At 4:13pm on March 10, 2009, donna saccomanno said…
Hi Jen - your fundraiser was wonderful. What a great group of family and friends you have! I was glad to be a part. Hope to see you soon.

Donna
At 4:11pm on August 26, 2008, Colin McKenzie said…
These boys are the most beautiful in the whole wide world, enjoy them while we can and like you make it count.

Colin
At 12:39am on August 24, 2008, Rebecca Saulsbury said…
Hey Jen, I don't know if you remember me, we met (or rather our husbands met!) in Philly. I'm the super tall woman with fuzzy hair and cat eye glasses. I coveted your beautiful shoes. My better (?) half is Evonn. Anyhow, glad to see you on the site and I'll check out Hope for Javier.
In health and happiness,
Rebecca
At 12:13am on August 8, 2008, Jill Castle said…
ADORABLE BOYS!
At 11:27pm on July 31, 2008, Lisa Jones said…
Jen,
I love the way you set up your website: Hope for Javier. I plan to take a more thorough look soon.
At 6:17am on July 3, 2008, Colin McKenzie said…
Jen

Greta to see you here on the web, great effort on the "Hope for Javier. It seems you are an old family at this now, a long cry from when we met in Philly last year.

Take care and give your sister a hug from me, she was truly a pillar of strength for you last year.

Warm regards'
Colin South Africa
At 11:14pm on June 3, 2008, Jill Castle said…
How did it go????
At 11:21am on May 12, 2008, Lisa Jones said…
Welcome to the PPMD community, Jen.
 
 
 

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