The PMD Foundation

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A World Where There Is No PMD
The Holiday Newsletter is available, to view the pdf version, click here

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Dozens of PMD families are posting info about their kids!  Get a FREE Yahoo ID and join PMDFamilySupport.

When you search the web, use the link above and Yahoo will donate a penny per search to the foundation!

[Tip: always scroll down to the bottom of this page for the very latest headlines!]

 ** 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:
bullet Raise awareness of the disease
bullet Create support for people with PMD
bullet Reduce misdiagnosis of PMD with other diseases, especially Cerebral Palsy
bullet

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.

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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-SCŪ human neural stem cells. The initial trials on young males with the connatal form of PMD will determine the safety of using the HuCNS-SCŪ 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


DONATING THE PAINLESS WAY
We have many ways to contribute to the PMD Foundation without spending a dime...

GOODSEARCH(search engine powered by Yahoo)
Searching the internet has become a daily activity for many people. They "Google" their way to a variety of helpful information and online purchases. Well, what if this searching activity could result in a contribution to the PMD Foundation? If you use the search engine GoodSearch in place of Google, it can. GoodSearch donates 50% of its revenue to approved charities designated by its users. On top of that, a variety of retailers will donate 3-20% of a "GoodShop" initated online purchase to the charity of choice. Setting up GoodSearch is easy (use the link in the left column.) It's a great way to contribute to the PMD Foundation with very little effort. For more information, go to
www.goodsearch.com.

iGIVE (online shopping)
Shopping or searching through iGIVE means a donation for the PMD Foundation. A penny or more per search, a $5 bonus for your first online purchase and up to 26% of your purchases will be contributed to the PMDF. Over 700 stores participate in this donation program, including Amazon.com, eBay, Staples, JCPenney, Barnes & Noble, Overstock.com, drugstore.com, Office Depot, QVC, Expedia, Home Depot, HSN, Best Buy, Drs. Foster & Smith, Gap, Buy.com, & NORDSTROM. Plus, as an iGive member, you SAVE money with exclusive coupons/free shipping deals. It's so easy to do. SELECT your favorite cause (the PMD Foundation, of course), register with iGive and SHOP at brand name online stores through the iGive Mall. Logon today to www.iGIVE.com and support our cause.

DONATION LINE LLC (Vehicle donation center)
Use Donation Line to donate cars, trucks, motorcycles, RVs, boats, jetskis or snowmobiles to benefit the PMD Foundation and get a tax deduction for yourself. They provide FAST, FREE pick-up of your vehicle (running or not) and have an A+ rating by the Better Business Bureau. The process can be initiated 24 hours/7 days a week by phone at 1-877-227-7487(ext. 2434 for PMDF) or by filling out their online form. A towing agent will contact you to arrange a pick-up time, and provide you with a pick-up receipt. The vehicle will be sold at auction and the PMD Foundation will send you a tax-deduction letter upon receiving the funds. For more information about tax deductions for donated vehicles, click here.

 
 

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):

 

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)

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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 .