A World Where There Is No PMD
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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 do not use charitable contributions to fund any salaries or to buy extravagant things. We use 100% of our contributions and proceeds to:
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Non-profit manufacturer customizes equipment for children with disabilitiesThe 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 RollsNEW 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 studyThe 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:
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.
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The PMD Foundation: 1307 White Horse Road, Suite 603,
Voorhees, NJ 08043 Tel.
609-443-9623
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- Wayne State.doc (28Kb)