Western New York Families

Information

Western New York Families

Families members of boys with DMD along with the boys themselves who are from the Western New York area.

Website: http://parentprojectmd.org
Members: 11
Latest Activity: Jan 16, 2016

Discussions

Depression/ Counselers?

Started by Heather Furner. Last reply by Susan Parzymieso Aug 22, 2011. 4 Replies

Interesting Article on Duchenne Research at UB

Started by Christine Piacentino. Last reply by Jeffrey Botwin Nov 11, 2010. 1 Reply

A therapy from UB

Started by Frederick Sachs Jul 7, 2010. 0 Replies

Comment Wall

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Comment by Suzanne Desmond on October 1, 2014 at 10:47pm

Have not been on here in awhile.

  Just wondering how everyone is???

Comment by Suzanne Desmond on April 17, 2012 at 8:20pm

The DMD community of WNY lost another one too soon.  Benjamin Muller, 27 passed on Friday, April 13, 2012.  Ben, his Mother Christine, his Father Rick & his Sister Michele started The Independence Foundation of Elma, NY...the foundation has opened 3 group homes for adults living in wheelchairs may have a more independent life if so desired...Ben lived in the 1st home located in East Auroura, NY...Ben even started a wheelchair soccer leage.  RIP Ben!  We will miss you very much.  His Memorial Service was beautiful & his life so inspirational.  Ben's Father wanted everyone to know that Ben did not suffer during his life, he lived his life to the fullest. www.theindependencefoundation.org

Comment by Christine Piacentino on February 8, 2012 at 8:17pm

Everyone,  Just wanted to let you know that even if you can't attend the Advocacy conference in DC.There are a couple of simple ways to get involved.  One is to sign-up for the Packet Drop Off and the other is to create a newsletter sheet about your son that can be included the drop off packet and sign up for the action alert  Please visit this link to particpate from home and look at option #2 and option#3:  http://www.parentprojectmd.org/getactive

Comment by Suzanne Desmond on October 6, 2011 at 5:04pm

I know this is late, but thought you all would or might be interested in the following that raises awareness & funds for Duchenne Research:

Suneel's Light Foundation's  "A Night to Shine"  2011

Hauptaman-Woodward Medical Research Institute

700 Ellicott Street, Buffalo NY 14203

Thursday, October 13, 2011;  5:30-9:00p.m.

Coctails at 5:30  and  heavy hors d'oeuvres at 6:30

for more information visit  www.suneelslight.org

If you can't go that's ok they can do a story board about your son.  Hope to see you there!  :)

Comment by Suzanne Desmond on July 19, 2011 at 10:05am
Please check out The Independence Foundation.  This is a local organization that helps adults & even children who are wheelchair bound or will be to lead more independent lives.  They are a great resource for me.  The Founders son has Duchenne MD & is 26 years old & lives in one of 3 group homes that The Independence Foundation opened.  Not only may they help you you might even be able to help them as well.  God Bless :)  theindependencefoundation.org 
Comment by Suzanne Desmond on November 8, 2010 at 2:11pm
Thank you Christine for joining this group.
Comment by Suzanne Desmond on August 16, 2010 at 11:12am
Just wondering & have a question. What doctors to you see regarding DMD/BMD & where? Do your sons have ASD, Autistic Spectrum Disorder? My son Francis has DMD-Splice Site Mutation, ASD & Mild Mental Retardation, MMR.
Comment by Suzanne Desmond on May 4, 2010 at 9:20pm
Where are all of you from in WNY?
 

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