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 use charitable contributions and proceeds to:
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A Public Service Announcement from film and television star, Gretchen Mol, spokesperson for Pelizaeus-Merzbacher Disease Click image to play the video (Windows .WMV file):
Pelizaeus-Merzbacher Disease Symposium a HUGE success! On April 17-18, 2009, PMD researchers and families met at the A.I. duPont Children's Hospital in Delaware. In fact, it was the largest gathering of PMD families ever, with 29 families attending! All four members of the PMD Foundation Executive Committee were present, as were three members of the Scientific Advisory Committee and Executive Director, Sharon Neumann.
The PMD Foundation would like to extend a heartfelt THANK YOU to all of the symposium speakers, partners and sponsors. We couldn't have done it without you: Nemours Biomedical Research CurePMD StemCells Inc. AstraZeneca
Excitement builds for the 20th Annual Riley PMD Conference - June 11-14, 2009 Indianapolis, IN This year marks the 20th anniversary of the Riley PMD Conference, and it's sure to be special! The event is organized by PMD mom and foundation board member, Patti Daviau. The venue is the Crowne Plaza Hotel at Union Station, 123 West Louisiana St, Indianapolis, Indiana - phone 317-631-2221 and tell them you are with the Riley PMD Group. For those who have never attended, all new PMD families and those with questions, concerns, or those who want their child seen by the neurologist you will need to be available on Friday morning June 13, so you may want to be sure to come on Thursday. For questions or additional information, please contact Patti at 317-635-7359 or daviau1@juno.com
And the winner of the 2008 PMD Foundation Hawaii Raffle is...NORMA DALLY FROM ENGLEWOOD, COLORADO!!!! Congratulations Norma! The winning ticket was drawn by our celebrity spokesperson, Gretchen Mol, at an event in Manhattan. A YouTube video of the big drawing will be available shortly! The PMD Foundation would like to offer a very special THANK YOU to everyone who purchased tickets and to all who took the time and effort to sell the tickets to make this a successful fund raiser. THANK YOU.
The PMD Foundation is extremely grateful to *Gretchen Mol* for giving her time and talent in order to help our PMD children. Thank you for making our first raffle drawing very special!
2009 Walk N Roll events are coming to a neighborhood near youThe 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:
The first event was held on October 19th, 2008 at Veterans Park in central New Jersey (Hamilton Township). This 1-mile walk generated $4,000 for the PMD Foundation!
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 or car magnet. The decal measures 3” x 5”. The car magnet is 5 + 1/2" diameter, and both are available for a donation of $5 each. To order one or more of these items, please visit our donations page or 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: Back to Top | ||||||||||||||||
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The PMD Foundation: 1307 White Horse Road, Suite 603,
Voorhees, NJ 08043 Tel. 231-633-HELP
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- 2009 Team Captains Form.pdf (89 Kb)
Decal
Car Magnet
- Wayne State.doc (28Kb)