A World Where There
Is No PMD
The May 2010 E-Newsletter has been sent out. To view a pdf version, click here
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[Tip: always scroll down to the bottom of this page for the very latest headlines!] 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:
THE 2ND ANNUAL JONES FAMILY WALK ‘N ROLL
Save the date, September 25, 2010, to participate in the Second Annual Jones Family Walk ‘N Roll for PMD. Stroll or roll along a 2.5 mile route on Chicago’s picturesque lakefront. The Jones Family (Gina, Gordon, Garrett and Gavin) will be there to lead everyone in the fun. At the “finish line” there will be refreshments, family games and raffles. Contributions and pledges will again support the PMD Foundation in its missions of research, increasing awareness and support for PMD patients. On September 18th, the Illinois Grand Consistory is hosting a kick-off “Black-Tie” dinner gala in Hillside, IL at the Best Western Hotel, donating 50% of the proceeds to the PMD Foundation. If you cannot attend, but wish to make a contribution in honor of the Jones Walk N Roll, choose your donation option to the left (check or credit card) and then click on the Walk N Roll button on the Make a Donation page. For more information, and updates, visit www.events.org/joneswalk. To see the Black Tie Dinner Gala poster click here
9th ANNUAL PMD GOLF OUTING - SEPT. 30, 2010
Mark your calendar - September 30th 2010. It won't be long until tee time at the Cranbury Golf Club in West Windsor, NJ. This year's outing/dinner will have a Las Vegas theme and you can bet on having a great time! Last year's event (see pictures above) was a great success and we're hoping to see even more friendly "swingers" this fall. Linda Leonard will once again organize the affair, including: Live music, raffles, casino-themed activities and tons of prizes. We are still looking for sponsors, so if you know a business that might be interested, make sure to tell them about this opportunity. For a copy of the brochure, with the sponsor and registration forms click 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.
CHICAGOLAND ABILITIES EXPO – July 9-11, 2010 Thanks to the Jones and Skellys, the PMD Foundation was represented at the Abilities Expo in Schaumberg, IL. Along with friends from the Illinois Grand Consistory and other members of the Jones Walk team, they manned a booth that drew a number of interested visitors. Attending this busy conference resulted in identifying new opportunities, more resource networking and increasing awareness of PMD. Teachers, nurses, and occupational/physical therapists were alerted to PMD’s existence and learned more about providing appropriate care. Members from another rare disease foundation provided camaraderie and new networking options. Variety Kids Charity, a national group that works with special needs children, promised volunteers to assist with the Jones Walk ‘n Roll. Gina made contact with representatives from Permobil (a wheelchair manufacturer.) They agreed to a fairly large sponsorship toward the Walk in September and perhaps an ongoing commitment to other PMD Foundation events. In addition, the Christopher Reeve Foundation met the group and encouraged the PMDF to apply for grants they offer in support of children’s activities and care. All in all, a very successful weekend of promoting the PMD Foundation and educating people about Pelizeaus Merzbacher Disease.
21st ANNUAL RILEY PMD FAMILY CONFERENCE
Thank you, Patti Daviau, for once again hosting the Riley PMD Family Conference in Indianapolis, IN. Old friends got re-acquainted and new friendships were formed. The Crowne Plaza at Union Station proved to once again be the ideal setting for both the informal family get-togethers and the more structured informative meetings. Saturday's presentations included: a PMD overview that was very helpful to the new families, a description of diagnosis & treatment for gastro-intestinal problems for PMD patients, a genetics review for PMD families, and updates on the current state of research in PMD therapy and treatment. Activities included attending a baseball game (with fireworks), shopping, a group dinner at the Spaghetti Factory and some hardy souls stayed up into the wee hours of the morning just talking and sharing the experiences of raising children with PMD. As you can see in the pictures above, a good time was had by all. Plan on attending next year's conference to join in the fun. For more pictures, click HERE Use the back arrow on your browser to return to the website.
A WIN-WIN FUNDRAISER WITH LYDIA'S UNIFORMS The Foundation has collaborated with Lydia’s Uniforms to devise an easy program to give everyone a way to help raise money with very little effort. Lydia’s Uniforms retails quality medical scrubs, lab coats, etc. nationwide through their catalogs and website. They have agreed to provide a 10% commission to the Foundation for all purchases made utilizing our special keycode, PWPMDC10. In addition, each buyer using our keycode will receive a 5% discount on regular priced products. That is truly a win-win situation. Most PMD families are closely allied with a variety of medical personnel. If each family spreads the word to their uniform-wearing contacts (doing them a favor by providing a 5% discount on items they need to buy anyway) the potential earnings are great. You won’t be asking for donations, you’ll be doing your medical friends a favor. For more information click below. To place an order online,click here. Join us in this simple, yet effective way to raise money for our cause. For a promotional flyer, click here
DONATING THE PAINLESS WAY In addition to the Lydia's Uniform Fundraiser, we have other ways to contribute to the PMD Foundation without spending a dime... GOODSEARCH(search engine powered by Yahoo) iGIVE (online shopping) DONATION LINE LLC (Vehicle donation center)
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): 
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 |
The PMD Foundation: 1307 White Horse Rd, Ste 603, Voorhees,
NJ 08043 Tel. 609-443-9623
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- Lydia's Uniform Fundraiser Information (35Kb)
Decal
Car Magnet