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FACES of New Jersey

FACES of New Jersey- Families Advocating, Connecting, Educating and Supporting

Location: New Jersey
Members: 57
Latest Activity: Apr 28, 2018

Discussions

Please Guide Me

Started by srinivas Dec 11, 2016. 0 Replies

Picnic-July 26th

Started by Beverly DeVergillo. Last reply by Dina Jul 25, 2009. 8 Replies

Waiting on the Sun - Play

Started by Julie Garcia. Last reply by Beverly DeVergillo Jun 4, 2009. 1 Reply

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Comment by Dana Edwards on March 6, 2009 at 7:37pm
Hi,
My name is Dana Edwards and my husband Brian and I are from Toms River NJ. Our son Tanner 4 was diagnosed a yr ago yesterday. We have six children and he is the youngest. His deletion is 3-36. We were told he had a Beckers deletion and a Duchennes progression. I am not a carrier (thank god). I would like to join the New Jersey group and hopefully find some friends that speak this language. I am so tired of explaining it and it hurts sometimes . I'm so mad also I kinda want to punch Jerry Lewis for not yelling at the MDA to give the bulk of funds to Duchennes because I feel that this is the worst of almost every MD. I keep reading # one genetic disease 100% fatal. I'm sorry but this is so frustrating. Hope to talk to you soon.
Comment by Jenny Garofalo on March 4, 2009 at 10:49am
Hi Eileen,
welcome "home" to NJ. we would love to have you be part of the FACES NJ families. I hope you can meet up with us at the next meeting. I will send the email to you with all the details.
Jenny

Staff
Comment by Ryan Fischer on March 4, 2009 at 10:15am
Hey Eileen!

We would love if you could join us at the next meeting. I will email you our latest update from past meetings. We'd love to have you guys join us!

Jen Garofalo, our NJ Coordinator, will be in touch...

Ry
Comment by djamel fathi on February 25, 2009 at 1:31pm
Hi,DINA We're also from s.jersey[cape may] We're going to see Dr WONG in the end of march,We been with dupoint,now We still with chop.
Comment by Patti Frank on February 25, 2009 at 12:12pm
Well, I've finally signed on to PPMD Community and still trying to navigate around the new site -- was so used to the old site. Many of you know Gene, Kevin and me (Patti) and we are part the of the NJ FACES group and we are in the Overview Video that I use very often as a tool to get the word out about PPMD and what DMD is all about. It is especially good for those who don't quite understand all this to view -- it gets the message across. I hope to meet more of you and hope that many of you are planning to come to the "Pour for the Cure" event that NJ FACES is working on. I know it will be a great success and so wonderful an event. Please check out my page here and learn about Kevin's story at www.caringbridge.org/visit/kevinfrank. Hope to hear from manhy of you soon. Kevin has been seen for the last five years at Columbia Presbyterian in NYC and once a year for the last two at Cincinnati -- they are very thorough there and if you can get there I highly recommend it. I like to also have the contact with a local area hospital and that is why we still get seen at Columbia in NYC and they are very open to workiing with Cincinnati. If you have any questions about either, please let me know.
Keep the faith everyone,
Patti Frank
Comment by Dina on January 26, 2009 at 6:41pm
I live in Absecon NJ. It is right outside Atlantic city.
Comment by Jenny Garofalo on January 26, 2009 at 11:46am
we drive to Ohio to see Dr Wong. we have been going there for the last 3 years. we love her and could not imagine going anywhere else
Where are you in South Jersey.
Comment by Marilyn on January 21, 2009 at 9:06am
My daughter takes my grandson to Dr. Finkel in Philadelphia at the Childrens Hospital in Philadelphia (CHOP), she is happy with Dr. Finkel's group.
Comment by Dina on January 21, 2009 at 8:45am
Does anyone from NJ see Dr. Wong? If not where do you take them? I live in south jersey and we go to Dupont in Delaware. They are really great there but I am thinking of gettinng an appt with Dr. Wong. Please let me know what you all think. Thanks:)
 

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