[Tip: always scroll down to the bottom of this
page for the very latest headlines!]
Welcome to the PMD Foundation! The PMD Foundation is a 501(c)3 non-profit organization formed to serve three
distinct interest groups as they relate to Pelizaeus-Merzbacher Disease: The
Children and Families, the General Public, the Researchers and the Clinicians.
You will find a wealth of information about Pelizaeus-Merzbacher
Disease on this site. It is our primary goal to serve YOU. We also
encourage you to contact any of the trustees, including the families who
have children that are affected by PMD.
All trustees of the PMD Foundation serve as VOLUNTEERS.
We use charitable contributions and proceeds to:
September 9, 2008 Golf Outing shaping up
to be the best ever!
The PMD Foundation will
host its 7th Annual Golf Outing at Ramblewood Country Club in Mt. Laurel, NJ on
Tuesday, September 9, 2008. The highest donor will golf with special
guest, Philadelphia Eagles Tackle Todd
Herremans. We will also have
dozens of prizes and auction items, including a special raffle for one week
in Hilton Head! Download either version of the brochure, and sign up
today!
Microsoft Word
Version: 
- 2008 Golf Brochure3.doc (109 KB)
Adobe PDF version:
- 2008 Golf Tournament.pdf (265
Kb)
2008
Walk N Roll events are coming to a neighborhood near you
The PMD
Foundation is pleased to announce an exciting new way to help our kids, and
raise awareness for our cause. PMD Foundation Executive Director, Sharon
Neumann, is leading the charge to work with families and communities across the
nation to host special fundraising and awareness-raising events, called Walk N
Roll. You are invited to participate and can find out more by downloading
the attached registration document.
Adobe PDF
format:
- 2008 Walk n Roll RegForm.pdf (89 Kb)
Non-profit
manufacturer customizes equipment for children with disabilities
The Adaptive Design
Association (ADA) is a New York City-based nonprofit organization whose mission
is to ensure that children with disabilities get the customized equipment they
need to participate fully in home, school, and community life. To that end ADA
designs and builds child-specific, commercially unavailable equipment in an
on-site, community-based workshop; offers training in adaptive design techniques
to therapists, teachers, parents, designers, volunteers, and the wider
community; and advocates for the universal establishment of adaptive design
services and education. For more information please visit www.adaptivedesign.org
or contact ADA at 212-904-1200 or info@adaptivedesign.org.
Board
Member Laura Spear published in ADVANCE for Nurses Magazine!
The PMD Foundation
thanks Merion Publications and Gail Guterl, for helping us raise PMD awareness
and for permission to link to the full article online.
Genetic
Illuminations
By Laura
Laprocido Spear, RN
Family histories can teach
powerful lessons. For me, the lessons began as a child watching my younger
brother live his life trapped in a body that did not work. His diagnosis at the
time was athetoid cerebral palsy, something I didn't fully understand then.
Not
until about 25 years later and after many different diagnoses did it become
clear he did not have athetoid cerebral palsy; he had Pelizaeus-Merzbacher
disease (PMD), a genetic condition that affects males.
Click
here to read the rest of the article...
Scientists
Discover the Molecular Switch for Nerve Cells' Insulating Jelly Rolls
NEW YORK, Aug. 31 -
Scientists at New York University School of Medicine report in a new study that
they have identified the molecular switch that turns on the production of
myelin, the fatty insulation around nerve cells that ensures swift and efficient
communication in the nervous system. Click here for more...
Show
your support of PMD Kids!
Now available!!!
Show your support of PMD kids by purchasing a window decal. These decals
measure 3” x 5” and are available for a donation of $5 each. They are
made of high quality vinyl and can be placed in a car window (if you desire) or
anywhere. They will not fade from UV light if you do choose to put them in your
car window. Our goal with this project is to raise awareness for PMD as
well as raise $5,000 dollars towards research and supporting families in need
that are affected by PMD. The full
cost of producing the decals have been
generously donated by Jim Lynch, Owner of Graphics Warehouse in Phoenix, NY.
Thanks Jim!! To order one or more of these decals, please send
a memo to PMD Foundation Volunteer, Dave Manley.
PMD Families
needed for funded research study
The PMD Foundation
encourages families to read about and participate in the research study being
conducted at Wayne State University. Details are contained in the
Microsoft Word attachment below:
- Wayne State.doc (28Kb)
Tips for Physical
Therapy (PT)
Betsy Mullan is a
Physical Therapist in Delaware who has been kind enough to draft two letters to
PMD families regarding physical therapy. One is regarding PT in general,
and the other is related to her experience working with JR Chalupa. Many thanks
to the Chalupa family and to Betsy for their permission to post this for your
benefit.
-
Physical Therapy Insights (PT.doc 13Kb)
