New York Families

Discussion group for families in New York on fundraising events, care, advocacy.

Members: 44
Latest Activity: Feb 18, 2015


Location of all the Families

Started by Christine Piacentino. Last reply by Sharon Wood Sep 29, 2014. 27 Replies

2013 Advocacy:

Started by Christine Piacentino. Last reply by Christine Piacentino Feb 3, 2013. 2 Replies

Comment Wall


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Comment by Rosalie on February 18, 2015 at 9:43pm

Hi all I live in Ronkonkoma we are looking for someone in the area Nassau Suffolk queens Brooklyn NYC that does serial casting. We just returned from Cincinnati Childrens and they want Christopher to have serial casting done he has lost over 10 degrees ROM...heel cords. Any suggestions names etc would be helpful and greatly appreciated I am getting nowhere except frustrated!!

Comment by Christine Piacentino on February 3, 2013 at 6:18pm

Everyone.  There is a Western NY F.A.C.E.S group. We had our kick-off meeting in December and am working on 2013 events.  If you are on Facebook here is the link:!/groups/458776850813189/ 

Comment by Christine Piacentino on May 17, 2011 at 9:08pm
Welcome Kimmy and Wendy.  Everyone,  It's been a very busy couple of months and I haven't kept up.
Comment by kimmy watters on March 19, 2011 at 4:29pm
 hi christine my  name is kimmy watters i was wondering if  may i join you and offer my support. kimmy watters
Comment by Lynn Bartels on February 9, 2011 at 3:22am
Going to advocacy I mean lol
Comment by Lynn Bartels on February 9, 2011 at 3:22am
Hey everyone was wondering if anyone else is going and bringing their kids this year I am bringing Jacob this year for the first time.

Comment by PPMD on November 10, 2010 at 4:59pm
Hi there fellow New Yorkers.. I got an inquiry about the need for a nurse in new york city for their son who's 20 and on a vent. Any suggestions? here is the information they gave me regarding the need...

Nurses are paid for by Medicaid and would be shift nursing. We have 22 hours a day that we usually divide equally between the day and night shifts. We need an LPN or an RN with vent experience. I have no set schedule right now but it's usually weekends that we run into trouble finding coverage.Also sometimes last minute a nurse will cancel and we could use someone who is willing to fill in.
Comment by Christine Piacentino on July 26, 2010 at 10:47pm
Our remodel was an addition. The one thing that we were told was that we could not get any aid on the bathroom if it was part of the new build. The bathroom needed to be a remodel of an existing room. We designed the addition on the house to abutt our son's old bedroom, which was converted to a fully accessible bathroom with a roll in shower.
Comment by Heather Furner on July 21, 2010 at 10:29pm
Hi Christine, thanks for welcoming me to the group. We went to the hearing about the wheelchair, they said we need to wait for at least six weeks before we hear the decision. I am struggling with the waiting game! We do however finally have a construction date of mid august for the bathroom mods. Is there anything that you might have changed or added when you look back at your remodel?? Ben and our family love Starpoint, he is heading to middle school in the fall.
Comment by Christine Piacentino on July 21, 2010 at 9:54pm
Hi Heather, Welcome to our discussion group. I have how is your modification coming. I'm sorry I didn't welcome you sooner. We put on an addition and a fully handicapped accessible bathroom. Not sure where you are in the process and how your wheelchair appeal is going. Please let me know. I know that there are a lot of families that hav egon thru this. Also Starpoint Middle School and High School particpated in some Coach to Cure MD fundraisers.

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