A World Where There Is No PMD
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 ** Want to help spread the word about PMD? See below. ** **Get your clubs ready, the 2012 PMD Golf Outing is June 7th, see the details below** ** StemCells, Inc. first stage clinical trials on PMD patients begin, see below ** ** Donate to the PMD Foundation the "painless" way. See how, below.**

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 and families who have children that are affected by PMD.

All trustees of the PMD Foundation serve as VOLUNTEERS.  Charitable contributions are used to:

	Raise awareness of the disease
	Create support for people with PMD
	Reduce misdiagnosis of PMD with other diseases, especially Cerebral Palsy
	Fund scientific research in the hopes of finding a CURE

                
SHARE AWARENESS

Many of you have mentioned an interest in spreading the word about PMD, but don't have the information to do so. The PMD Foundation would like to help by providing brochures you can use in your efforts. Limited numbers of printed copies are available by request at PMDAwareness@pmdfoundation.org, but to make it even easier, we have made the brochure pdf files available online. You can now open the files and print them out on your color printer. The brochure on the left is for the general public, not filled with medical jargon, but informative for the lay person. It is a tri-fold, printed on the front and back. To open it, click here. The brochure on the right is geared to those in the medical field and provides information to assist in the correct diagnosis of PMD versus Cerebral Palsy (a common mis-diagnosis.) It is a bi-fold, printed on the front and back. To open it, click here.

2012 PMD GOLF OUTING - JUNE 7th

It's time agin fer th' annual PMD Golf Out'n - th' most fun you'll have on a golf course all year! This year's theme be PIRATES, so grab your eye patch, your sword an' a pint o' grog an' g't ready t' walk th' plank!

Please join us for the annual PMD Golf Outing and Dinner on June 7th, 2012. Once again, we have a fun-filled day planned with prizes, contests, giveaways and a theme that was determined by last year's guests ... PIRATES!! Don't be surprised if you walk the plank or are challenged to a duel during the round of golf. But no worries, there are plenty of scalliwags and pirate wenches on hand to make sure you survive the day.

If you're not a golfer, please join us for cocktails and dinner in the evening, including plenty of prizes, live music and a few pirate-themed surprises! Your contributions - monetary or via prize donations - are critical to the success of this event. Please be part of this important day, which raises funds that go directly to support the kids and families effected by Pelizaeus-Merzbacher Disease. For more information visit the event website, check out the brochure or contact Linda Leonard at lleonard@pmdfoundation.org

STEMCELLS, Inc.-CLINICAL TRIALS FOR PMD PATIENTS

On February 9, 2010, Children's Hospital at the University of California - San Francisco (UCSF) began Phase I safety studies on a potential treatment for Pelizaeus-Merzbacher Disease (PMD). This study is sponsored by StemCells, Inc., the company providing proprietary HuCNS-SC® human neural stem cells. The initial trials on young males with the connatal form of PMD will determine the safety of using the HuCNS-SC® cells on patients with a myelin disorder while monitoring their potential effectiveness as a treatment for PMD. Testing has begun on one child, but the hope is that a total of four patients will become eligible for this first study, which will include at least a 12 month follow-up. Potential candidates must be male, between 6 months and five years of age, with genetic confirmation of connatal PMD. Eligibility is also dependent on a number of other factors, including each family's ability to comply with follow-up exams and additional testing. Travel expenses and lodging while in San Francisco will be covered. More detailed information about the study, including patient eligibility and enrollment, can be accessed at the UCSF website.

Link to UCSF Website:  Click Here
To see a PDF copy of the StemCells, Inc News Release:Click Here

The PMD Foundation: 1307 White Horse Rd, Ste 603, Voorhees, NJ  08043   Tel. 609-443-9623
If you encounter problems or have questions about this website, contact us at techsupport@pmdfoundation.org.
Last updated:March 7, 2012 .