FACES of New Jersey

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Comment by Jennifer Bauer on June 2, 2011 at 11:19pm

Hi all!

I was wondering if there was anyone on here that has a sibling with DMD?  Just trying to find others who can relate to my experience with DMD. My brother is 30 with DMD and he is still fighting!  I'd love to get involved somehow.  I am not working and have free time this summer.

Jen Bauer

Comment by Morgan Eisenberg on May 31, 2010 at 9:25pm

Hello everyone!
I just posted in the discussions about the Duchenne Muscular Dystrophy Gala I am planning for August of 2011 in the Philadelphia metropolitan area. If you are interested in helping out, I could use all the advice and guidance in the world! Please check out my post. Also, if anyone else is having any kind of fundraising activities, please let me know and I would love to get involved.
-Morgan

Comment by Eileen and Peter Kearney on March 13, 2010 at 5:55pm

Hello all! We are about to begin modifying our house to make it handicapped accessible. We would love any advice/suggestions from you! What do we need to have in our new home to make Kevin's life (and our life) easier, better, etc?

Comment by Vincent Canale on November 10, 2009 at 9:33am

Finally worked my way into this forum. Look forward to seeing you all at the next FACES meeting in March. Be well.

Vince

Comment by Patti Frank on October 2, 2009 at 11:09am

Hi Pilar,
Got your message on my page and just sent you a comment with my e-mail so we can exchange ph numbers. You've come to the right place and we are all here to support eachother and answer the tough questions too.

Hope to hear from you soon! My computer was down for a week but now I'm back.

Patti Frank

Comment by Suzanne Gaglianone on October 1, 2009 at 10:03am

I will email you at your personal email address and give you my phone number to call so we can talk if you would like. Don't worry there are many people who can help.

Comment by Pilar Rizzo on October 1, 2009 at 8:23am

Hello Suzanne ,
Thank you for your respond, yes, they do. and yes it it frustrating at this point my son is having a lot of anger ,and questions, i beleive because he does'nt kmoe exactly his condition, my husband and never reallly told him the truth, i think we made that mistake... I don't know if all the parents reallly when honest and straight forward with the situation... please i need advise. thanks, Pilar

Comment by Suzanne Gaglianone on September 30, 2009 at 10:44pm

Hello Pilar
We would love to have you join our group. Does PPMD have your contact info?
It is very frustrating so it does help to speak to other parents and family members going through the same thing.

Comment by Pilar Rizzo on September 30, 2009 at 7:57pm

Hello, my name is Pilar from New Jersey, Nutley i will like to join faces of new jersey also. my Sebastian just turn 11 with dystrophin exxon deleted 13-17 frame mRNA shifted.. this is so confused, sometimes just can't take it. thank you

Comment by Suzanne Gaglianone on March 11, 2009 at 10:20am

Hi NJ families.
Hello Dana, obviously we feel your frustration and pain and there is comfort in communicating with people who truly understand. The NJ families have a meeting coming up on March 22 if you are interested. Here's the info: The next NJFACES meeting will take place on March 22, 2009 from 12:00-4:00pm at the Far Hills- Bedminster Fire Dept. 100 Miller Lane Bedminster, 07921. http://www.fhbfd.org/
Please RSVP with Jen Garofalo: NJFACES@parentprojectmd.org

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