Families members of boys with DMD along with the boys themselves who are from the Western New York area.
Latest Activity: Jan 16, 2016
Started by Heather Furner. Last reply by Susan Parzymieso Aug 22, 2011.
Started by Christine Piacentino. Last reply by Jeffrey Botwin Nov 11, 2010.
Started by Frederick Sachs Jul 7, 2010.
Have not been on here in awhile.
Just wondering how everyone is???
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
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
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! :)
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