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The PMD Foundation
E-Newsletter
Volume V Issue 2
September 2010
Striving for a World Without PMD
In this issue
Rafael Stutterd
—
Melbourne, Australia
Our son Rafael is now 21 months old. He’s a happy little boy
with the best laugh in the world and thankfully there are
many things that make him laugh. He likes things that move
and make noises. He’ll smile and laugh when we open and
close drawers, cupboards and doors, when the windscreen
wipers are on, with toys and books, peek-a-boo and playing
with Dad. Raf also likes going for walks in his pram and
getting into his cot at bedtime (another thing we are thankful
for!)
Raf is our first and only child. He was diagnosed with PMD
when he was 6 months old. He has had support with his physical development and vision
since he was a baby. He now rolls side to side on the floor. He has a small but increasing
amount of head control when he is supported sitting. He loves turning the pages of a book
and is starting to point at objects on the page. He makes lots of beautiful sounds that
clearly mean something to him but not yet to us!
We have appreciated the information the PMD Foundation provides and the sharing of
news and stories from other families affected by PMD. We are following research developments keenly and support these in any way that we can.
Our love and best wishes to all the members around the world.
Designated Giving with the United Way
Many companies are in the midst of their United Way campaigns. Don’t forget
that you can include the PMD Foundation as your charity of choice. Just write it in
on your form (EIN 52-2336287 if needed). Recruit your co-workers too!!
Chairman’s Message
We have two major fundraisers coming up in the next
few weeks. Gina Jones will
again be sponsoring a Walkn-Roll on the Chicago waterfront on Saturday, SeptemThe following
ber 25th.
Thursday, Linda Leonard will
be hosting the 9th Annual
Golf Outing at the Cranbury
Golf Club in West Windsor,
NJ. If you are going to be in
the vicinity of either of these
events, please try to stop by
and support these two
Moms.
If you cannot be
there, you can support them
with a donation. The full
information for each event
appears in the newsletter
and on our website at
www.pmdfoundation.org.
We are currently looking for
volunteers who can spare
just a few minutes per week
to assist us with our accounting and database management. If you or someone
you know has experience
with Quickbooks, or is willing
Chairman’s Message
1
1
Save the Date
Golf & Walk ‘N Roll
2
Research Updates
Dr. Garbern
2
People in Action
Kristen, Natalie & Marsha
3
Fundraising Ideas
Donating &
Other Updates
4
5
Trustees
Don Hobson
Board Chairman
Delaware
Patti Daviau
Indiana
Chloe and Michael Stutterd
I hope that everybody had
an enjoyable summer.
It
was one of the hottest on
record here on the Atlantic
seaboard and I am happy to
greet the arrival of fall.
Rafael Stutterd
PMD in Australia
to learn, please contact me
at:
[email protected]
I would also like to wish the
best of luck to our own Dr.
Jim Garbern, as he moves his
shingle from Wayne State
University to the University
of Rochester.
With this
move, he is keeping up with
the trends in leukodystrophy
research. We are privileged
to have him as Chair of our
Scientific Advisory Board.
Wishing you all a happy Autumn.
Don Hobson
James Garbern, MD, PhD
Scientific Advisory Board
Chair
Michigan
Rob Gasperetti
Treasurer
New York
Gina Jones
Illinois
Jeff Leonard
Secretary
New Jersey
Dave Manley
New York
Ed Skelly
Illinois
Laura Spear
New Jersey
Ann Ventura
Virginia
NEWSLETTER
Rob Gasperetti
Editor
Kathy Kanous & Don Hobson
Publishers
Save the dates!!!!
9th Annual PMD Golf Outing — Come Out Swinging!!
It is not too late to join us or sponsor a hole at the 9th Annual PMD Foundation Golf Outing, which is taking
place on September 30th, 2010 at the Cranbury Country Club, 49 Southfield Road, West
Windsor, NJ 08550. This year’s theme is “Las
Vegas” and all the entertaining activities will center around the excitement of the gambling
mecca. Registration will begin at 11:30, followed
by a BBQ Luncheon, a rousing round of golf and
a magnificent finale of dinner/cocktails with live
music and special raffles. To make sure this event is a
huge success, we are still looking for sponsors, volunteers
and prize donations. Contact Linda Katz Leonard by email
at [email protected] or phone (609-577-3747) if you’d
like to help. A brochure is available at :
www.pmdfoundation.org/images/2010GolfBrochure.pdf
Also, check out the PMD Foundation website for more details about this fabulous event. So keep your eye on the
ball, and don’t forget to follow through…
2nd Annual Jones Family Walk ‘N Roll for PMD—Sept. 25th
Stroll or roll (wheelchair) along a 2.5 mile route on Chicago’s picturesque
lakefront, from 63rd Street Beach to Promontory Point and back. 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.
Be sure to purchase raffle tickets for the chance to win White Sox tickets,
sports collector items and other great prizes. Tickets will be available during
the event.
Contributions and pledges will again support the PMD Foundation. To register
for this worthwhile event, of if you cannot attend, but wish to make a contribution in honor of the Jones Walk N Roll go to:
www.events.org/joneswalk
Research Updates
Dr. Garbern moves to Rochester, NY
Most families who are affected by Pelizaeus-Merzbacher If you need to contact him, he would love to hear from
Disease have a strong relations ship with Dr. Jim Garbern.
you. His new contact information is:
He is pleased to announce that he has accepted a new
James Garbern MD, PhD, FAAN
position at the University of Rochester, in Rochester, NY.
Department of Neurology
There he will be able to expand his research into a treatUniversity of Rochester Medical Center
ment and eventual cure for PMD. Of course, he will still
601 Elmwood Ave.
be seeing families and conducting clinical research, while
Box 645
remaining the Chairman of our Scientific Advisory Board
Rochester, NY 14642
and member of the Board of Trustees.
[email protected]
September is Leukodystrophy Awareness Month
September 25th is “World Leukodystrophy Day”
September is Leukodystrophies Awareness Month. Show your commitment by wearing navy blue and tying navy blue
ribbons on your trees, car antennas, even your dogs. : ) Recruit your friends and relatives to do the same! When people notice, and ask what the navy blue ribbon stands for, tell them all about PMD and leukodystrophies. September
25th is World Leukodystrophies Day. On that day, make it a point to bring awareness to someone who doesn’t know
about PMD. Only through public knowledge can we gain support for the donations and federal funding necessary to
“Rid the World of PMD.” Help spread the word!!!
Volume V Issue 2
Page 2
People In Action
Kristen Malfara wins ‘Women Who Make A Difference’ Award
Kristen Malfara
was one of
three women
honored
for
the extraordinary
impact
they
have
made on children's
lives
through their
foundations.
The "Women
Kristen & Morgan Malfara
Who Make a
Difference" honorees were chosen
from more than 100 entrants, each of
whom is making an extraordinary im-
pact in children's lives within her community. The award is sponsored by
Longines, tennis star Steffi Graf and
Town&Country magazine. Kristen will
be featured in a special section of the
Feb 2011 issue of Town&Country.
Kristen and her husband, Robert Malfara, founded The M.O.R.G.A.N. Project (“Making Opportunities Reality
Granting Assistance Nationwide”) in
honor of their own son, Morgan –
who has PMD. The Malfara’s created
a 100% volunteer non-profit organization to improve the quality of life
for families of special needs children.
The M.O.R.G.A.N. Project provides
support to parents/caregivers and
acts as a reference source for information, financial resources, used
equipment exchanges, research and
clinical studies, and support groups.
This is not the first time Kristen has
been recognized for her inspirational
work.
Ms. Malfara was a 2007
“VOICES Campaign” winner and a
2009 PEOPLE/MLB “All-Stars Among
Us” winner. Congratulations Kristen
on getting the recognition you deserve. For more information about
Kristen’s foundation, go to:
www.morganproject.org
Natalie Blakemore — Unlimited Play & Zachary’s Playground
Natalie Blakemore was not content to
let her son, Zach (one of our PMD
boys) be a couch potato. He loves
Wii and other video games, but she
wanted more for him, the ability to
interact with other children. Walkers
and wheelchairs are real limitations in
the normal playground. Natalie found
out early that equipment for ablebodied children made it impossible
for her son to participate. As with
any parent, frustration and sadness
were the initial result. Then one day,
on a vacation to Washington D.C., a
wonderful thing happened.
The
Blakemore family found an accessible
playground. Zach was able to play
with other children in the fresh air
and sun.
A
seed
w a s
s o w n .
They recognized
the need
for more
of these
accessfriendly
play areas and founded a non-profit
called “Unlimited Play.” Four years
(and lots of work) later, Zachary’s
Playground opened in Lake St. Louis.
Through determination and love a
dream
became
reality.
This new
p l a y ground
provides all children a place to enjoy
being a child.
Job accomplished.
However, the Blakemores didn’t stop
there. Between now and Fall 2011
three more playgrounds are being
built with the help of “Unlimited
Play.” For more information, and pictures of “people in action” visit:
www.unlimitedplay.org
Max & Marsha Gross — A Rainbow Connection
Max
Gross became Bar Mitzvah on July 31,
2010. It is customary for the
students in his
synagogue
to
perform
a
“Mitzvah Project”
as part of their
Max Gross
transition to becoming an adult. This is basically a good
deed that benefits the community.
For his project he chose to support
The PMD Foundation in our search to
Volume V Issue 2
find a cure. With his mother, Marsha,
Max is selling PMD awareness wristbands that he helped design. Max
likes red, yellow and blue, so they
took the three colors and swirled
them together to make the PMD
wristbands.
“Pelizaeus-Merzbacher
Disease” is etched on one side, and
“www.pmdfoundation.org” on the
other. Max is selling the PMD awareness bracelets for $2.00 each and is
donating all of the proceeds to The
PMD Foundation.
He has already
raised $520.00 for his efforts. Keep
an eye on The PMD Foundation web-
site.
the
bracelets will
soon
be
available for
purchase
online.
To purchase
one in the meantime you can contact:
Marsha Gross
18 Jackson Valley Road
Washington, NJ 07882
[email protected]
Page 3
Raising Funds —
Remember, every dollar counts
iGIVE
GOODSEARCH
DONATION LINE LLC
(search engine powered by Yahoo)
(online shopping)
(vehicle donation center)
What if your online searching could result
in a contribution to the PMD Foundation?
If you use the search engine GoodSearch
it can. GoodSearch donates 50% of its
revenue to approved charities designated
by its users. On top of that, many retailers
will donate 3-20% of a "GoodShop" online
purchase to the charity. It's a great way to
contribute to the PMD Foundation. Setting
up GoodSearch is easy at:
Shopping or searching for purchases
through iGIVE can result in 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, Office Depot, QVC, Home
Depot, HSN, Gap, & NORDSTROM. Plus,
as an iGive member, you SAVE money
with exclusive coupons and free shipping
deals. It's easy. Select the PMDF as your
favorite cause, register with iGive and
shop at brand name online stores through
the iGive Mall. Logon today to:
Use Donation Line to donate cars, trucks,
motorcycles, RVs, boats, jet skis 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. Get more information about tax deductions for donated
vehicles, at:
www.goodsearch.com
www.iGive.com
Fundraising the Borders Way
The kids are back
to school, it is getting cooler, leaves are
going to be changing colors, and houses
will soon be adorned with pumpkins,
witches, and ghosts. Yes, we have to
face it that summer is over. Can Christmas be just around the corner?
Well, it will be here before you know it so
the time to make your plans is fast approaching. A fun way to get into the holiday spirit is to volunteer to wrap gifts at
your local Borders bookstore. In the past
three years, many PMD-affected families
have raised funds for the PMD Foundation
this way. An added benefit is the enjoyment of sharing PMD stories with shoppers and raising awareness in a festive
atmosphere
Lydia’s Uniform
To participate, you must speak to the
manager at your local Borders Bookstore
to find out what dates are available for
non-profit fundraising. They supply the
table, tape, and wrapping paper. The
PMD Foundation can supply you with brochures, pens and display items. Then, you
just put out a tip cup and talk to the customers as you wrap. Some stores may
require proof of our IRS not-for-profit
status, which we’ll be happy to supply.
Contact Rob Gasperetti at (516)270-5185
or at [email protected]
for more information or for set-up materials. It can be a rewarding experience for
the Border’s customers, for yourself, and
for the Foundation.
Win-Win Fundraising
The Foundation has collaborated with
Lydia’s Uniforms to give everyone an
easy way to raise money for the
PMDF. Lydia’s Uniforms agreed to
provide a 10% commission to the
Foundation for all regular priced purchases made utilizing our special keycode, PWPMDC10. Plus, each buyer
using our keycode will receive a 5%
discount on regular priced products.
That’s truly a win-win situation. Most
PMD families work closely with medical personnel. If everyone spreads the
word to their uniform-wearing friends
Volume V Issue 2
www.donationline.com
(providing a 5% discount on items
they need to buy anyway) the potential earnings are huge. You won’t be
asking for donations, you’ll be doing
your medical friends a favor. For
more information go to our website.
To place an order, login to:
www.lydiasuniforms.com
and be sure to use our keycode. Join
us in this simple, yet effective way to
raise money for our cause. A promotional flyer can be downloaded at:
www.pmdfoundation.org
Page 4
The PMD Foundation
1307 White Horse Rd.
Suite 603
Voorhees, NJ 08043
Phone: 609-443-9623
Email:
[email protected]
Website:
www.pmdfoundation.org
Can You Help Fulfill a Dream?
Living with PMD is tough, particularly
when it’s not diagnosed until you’re in
your 20’s. Losing a father makes it
even harder, and experiencing neglect/
abuse in a group home is unthinkable.
Scott Flynn has been through this and
more. Thanks to the diligence of his
Step-Mom, Mary, Scott is now in a
safer environment, though his health
has suffered. Through all the bad
times, Scott took solace in the inspirational music of Dolly Parton. Scott is
one of her biggest fans. He knows the
words to all her songs and can tell you
about her life/history in detail. Scott’s
fondest wish is to meet Dolly in person, but he’s in Pennsylvania and she’s
a busy lady (but not doing concerts
this year.) Do any of you out there
know people in the entertainment
world who might help us make Scott’s
dream come true? If you have ideas
regarding how we can help Scott,
please let us know at:
PMD Logo Inspiration - by Maureen Manley
My inspiration for the PMD Foundation’s new logo is in my blood. The PMD Foundation has a special
place in my heart because my cousin, Jaden Manley, was diagnosed with PMD in September 2003. He
was 2. I wanted families with newly diagnosed patients who are unfamiliar with Pelizaeus-Merzbacher
Disease to know that the PMD Foundation is there for them. When Jaden’s parents learned about
Jaden’s diagnosis, they were overwhelmed with erroneous information before finding the truth through
the PMD Foundation. Thanks to the PMD Foundation, the Manley’s no longer felt alone in living with
PMD. I wanted to create a logo that represented the hope they had been searching for, and the structure and truth they needed to live (happily!) with PMD. I couldn’t have done it without Jaden’s father,
my Uncle Dave. It was his story that prompted the concept for the logo, and his dedicated involvement
in the PMD Foundation that made me want to donate my time. I hope the new logo shows other families like mine that the Foundation can aid in the navigation of information about PMD like a lighthouse
aids sailors in navigating the sea.
21st Annual Riley PMD Family Conference
Thank you, Patti Daviau, for once again organizing 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. Presentations
included: a PMD overview that was very helpful to the new
families, a description of diagnosis & treatment for gastrointestinal 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 to the left, a good time was had by all.
Plan on attending next year's conference to join in the fun.
[email protected]
Together, we can make 2010 the year that a treatment is
discovered, leading to an eventual cure!
Our Vision:
A World Where There Is No PMD
Please make a donation either:
By visiting our website to make a safe and secure contribution
www.pmdfoundation.org/donation.htm
Our Mission:
•Provide support for families affected by PMD
Or
By clipping the following coupon and mailing it with your check
•Raise public awareness and support for PMD
•Fund research of Pelizaeus-Merzbacher Disease
My Donation
I would like to support the PMD Foundation’s mission of family support, awareness and research.
Enclosed
is my tax-deductible donation of $__________.
Name: _____________________________________________________
Address: ___________________________________________________
City: _____________________ State: ______ Zip: _________________
Please detach and mail with your contribution to:
The PMD Foundation
1307 White Horse Rd, Ste 603
Voorhees, NJ 08043
THANK YOU FOR YOUR SUPPORT!