A World Where There Is No PMD
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 ** Dr. James Garbern has lost his fight with pancreatic cancer, details below** **The Blakemore Family on The Today Show, 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

REST IN PEACE DR. JIM

Dr. James Garbern, Chairman of the PMD Foundation Scientific Advisory Committee and member of the Board of Trustees, passed away the morning of November 10th. He was diagnosed with pancreatic adenocarcinoma on July 6th. Jim was weakened after undergoing two rounds of unsuccessful chemotherapy and recently made the difficult decision to enter into a hospice setting.

A message from the Tina Garbern (Jim's sister):
"It is with the utmost grief and the deepest sadness that we relay to all who love James Garbern that he died peacefully and quietly in his sleep early morning, November 10, 2011. His loving wife and his two adoring daughters were by his side. Jim was a total family person, he savored every ounce of being a devoted husband and loving father. All who knew Jim recount so many wonderful stories of his humor, his dedication to his work and his focus on helping others. He lived a full and meaningful life and the impact he had will live on. My brother David, my sister Lisa, my mother Betty and I thank everyone who has stopped by to write a note in honor of Jim. We also thank those who were able to physically stop by and see Jim while he was in the hospital. All of your notes of caring and conversations with him mean the world to us. Please continue to stop by the private Facebook page we have created https://www.facebook.com/groups/JamesGarbern/ 
to share your stories, your tributes and especially any photos so that we can keep these stories of him alive."
Ever the scientist and thinking even past his own demise, he and his wife chose to donate his brain to research and it has already been sent to the Harvard brain bank where Jim will continue to contribute to research and live on, helping in the study of neuro disorders such as Alzheimers, Parkinsons and Huntingtons.

From Jim's wife and daughters:
In lieu of flowers or gifts they have chosen to ask those who are interested to send donations to the PMD Foundation, a cause so meaningful to Jim and one for which he worked so hard to find a cure.  Click here to donate. 
 

BLAKEMORE FAMILY APPEARS ON THE TODAY SHOW

Many of you know Natalie Blakemore as the founder of the group Unlimited Play, promoting, planning and providing playgrounds where all children can play together and enjoy themselves regardless of physical limitations. Natalie has three children, a son, Zachary, who has PMD, and two younger daughters, Brianna and Cassi. In spite of being a very busy Mom and a full time advocate for accessible playgrounds, she made time to write to the Today Show, bringing to light a dilemma faced by many PMD families. A "special" child requires "special" attention. Their "normal" siblings are rarely in the limelight, but expected to be there to provide needed support. This experience can bring out a selfless, caring nature and early maturity, yet Natalie points out that these siblings may also feel like the "invisible" ones. It was heartwarming to see her daughters get the recognition they deserve. It sets a great example for voicing appreciation to brothers and sisters of PMD-affected children. Thank you to all who help in the care of your PMD brothers (and sisters). For those of you who missed the show, you can view the episode here.

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:August 7, 2011 .