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News
New on
the Website
Events
Research &
Treatment Advocacy
Make a Difference
Our yearly conference will be in historic Valley Forge,
PA. The meeting will be informational, exciting
and fun. Speakers include Dr. Peter Baas of
Drexel University and Dr. John Fink, our SPF Medical Advisor. On
Friday night, Patricia Leisner Clements will speak and
answer questions about Medicare and disability benefits. . There are a few videos left for early
registrations. The video
features a
physiotherapist working with 3 HSP patients
demonstrating different therapy modalities. Come
join us and hear from leading experts about cutting edge
research and meet others dealing with similar
challenges. Look for updates on the
website.
Make hotel room reservations at the
Valley Forge Crowne
Plaza
by calling (610) 265-7500 or 1 (800)
972-2796.
Our group rate is $109/night
(Reservations must be made by May 6 to get this rate).
John K. Fink, MD; University of Michigan (SPF
Medical Advisor and recipient of SPF Research Awards)
Peter Baas, MD; Drexel University
(recipient of SPF Research Award)
More Being Planned, Stay
Tuned
California Congressman Joe Baca introduced legislation
to bring greater awareness to the neuromuscular disease
Primary Lateral Sclerosis(PLS). The resolution
encourages Americans to recognize February, as Hardy
Brown-Primary Lateral Sclerosis Awareness Month.
Together we can make a difference. We received a
letter from Joe Baca's office stating that they were
excited to see his resolution included in our Synapse
newsletter. Before presenting this resolution to
the House for a vote, 100 co-sponsors are needed for this
resolution. Once passed, every February will be a
Hardy Brown PLS Awareness Month. Instructions and a
sample letter are available
online to write
to your representative.
Please take about 5
minutes to send an email to get your Representative
to co-sponsor this
resolution to bring awareness to Primary Lateral
Sclerosis.
Write to Your Representative today
Our first Synapse newsletter was
recently mailed
to known community members. If you want to continue to receive
Synapse via U.S. Mail, be sure to return the envelope enclosed in
the current edition . If your mailing address has
changed please
let us
know. Synapse
PDF file
New Links
Benefits Check-Up is the nation's most comprehensive
Web-based service to screen for benefits programs for
seniors and disabled citizens with limited income and
resources.
Govbenefits online
screening tool is free, easy-to-use, and completely
confidential. They do not require your name, phone number,
Social Security number, or any other information that could
be used
to identify you. This site is designed to ensure that you
are getting all the benefits available to you.
The Bath Lift
is a
battery powered lift chair designed to help with safe
transfers in and out of the bathtub. It gently lowers you or
your loved one to the bottom of the tub, allowing for
comfortable
bathing. When ready, it raises its passenger back up to the
top.
New Mobility
encourages the
integration of active-lifestyle wheelchair users into
mainstream society, while simultaneously reflecting the
vibrant world
of disability-related arts, media, advocacy and philosophy.
The
Handi-Ramp
Foundation will assist with funding to help those people
who cannot afford to build ramps and lifts at their home.
The Foundation was formed out of a need to provide services
for people with disabilities and their families. Insurance
companies (including Medicare and Medicaid) will readily pay
thousands of dollars for wheelchairs and scooters for their
clients, but they will not pay for any home modifications.
The result is that thousands of people become prisoners in
their own homes while others cannot visit family and
friends.
Home Access
Program helps individuals and families find realtors who
can assist in the search for a handicap accessible home or
consultants who can modify a current home to meet the needs
of people (and family members) with a disability.
New England Spring Seminar
Connection - Waltham, MA; March 29, 2008
The New England Seminar Connection will be held
at the Best Western Hotel in Waltham (north of Boston)
from
9:30 a.m. - 3:00 p.m.
Please contact
Kathi Geisler
for more details. Here is the
Registration Form.
Northern California Spring
Connection - March 29, 2008
A SPF Casual Luncheon Connection is being planned
for Northern California on Saturday, March 29. Please
contact
Cheryl
Schmidt
or
Linda Gentner
if you are interested in attending.
Tulsa Connection - April 12, 2008
Mark Dvorak invites you to attend a Casual
Connection on April 12th from Noon-3 p.m. in the Tulsa,
Oklahoma area. It will be
led at the The Delta Cafe
(store #111), 11101 East 41st in Tulsa. If you are
interested, please contact
Mark .
Spring Fling -
Berkeley Springs; May 2-4, 2008
The 8th annual Spring Fling will be held
on May 2-4 in Berkeley Springs, West Virginia. There will be an
Arrival Dinner on Friday,
May 2. Please contact
Ronnie Grove
if you plan to attend.
There is still a debate whether primary lateral
sclerosis(PLS) is a distinct pathological entity or
whether it represents one end of a continuous spectrum
of motor neuron disease (MND). In this report they
presented 4 patients who have been observed from the
time of symptom onset (1990-1999) through January 2007.
The prospective analysis of the PLS research here is in
agreement with data from other studies suggesting that
pure PLS cases have a prolonged course of disease with a
high level of independence when compared to other MND.
Go
here for more information!
Mutations in the Atlastin/SPG3A
gene that expresses the Atlastin protein cause a
juvenile onset form of HSP. This study was
conducted by a team led by Dr. Craig Blackstone who
serves as a member of the SPF Scientific Advisory Board.
Read more about this study
here.
Join the SPF Board of
Directors - There are two open Board of Directors'
positions. If you have Management, Finance,
Communication, Fundraising, or Foundation experience,
you may have what the SPF needs. Individuals interested
in serving as a member can read the requirements (PDF
file) and download an application (Word
document). Please submit the application to
information@sp-foundation.org.
State Ambassador -
As a State Ambassador, you would help communicate with
interested people in a specific geographic area. You
would be asked to send out a Welcome email to new
community members and help answer questions, help
promote Connection meetings or TeamWalk events in your
area. This is a great way to help out and doesn't take a
lot of time. We provide the basics and you make it
happen for your area. If interested, please contact
Linda Gentner at
lkgentner@aol.com.
Personal donation - a
donation can be mailed in, made online or a monthly
contribution can be set up-
Donate
Corporate donation - please check with your employer to
see if they have a Matching Gift plan. Some employers
with match what you
donate up to a certain amount. Your employer may make a
contribution independently of what you do. Is there a
Foundation set up with your employer that makes
contributions to help others? Please check with your
Human
Resource department for details.
Donate a car - If you are interested in donating
a car, the Car
Program Inc. will make arrangements to pick it up
and proceeds from the sale (less an administrative fee)
will be sent to SPF. Only charities that have 2
donations/mo are listed on their website so SPF is
registered with the Car Program but will not be on the
list.
Shopping Mall - by shopping on the SPF Shopping Mall and
designating the SPF, you help raise money from the
companies that
participate. Please
remember to
designate SPF so a
contribution will be made.
Enjoy our year-end SPF Grab Bag,
featuring a TeamWalk T-shirt, SPF Note Cards and Ribbon
Magnet at a sell-out discount price
here.
Planned Giving - you can set aside a gift to the
SPF in your Will.
Gifts-In-Kind - you may be able to provide a service to
the SPF that saves SPF resources. Example - The SPF would
like to mail a piece of
literature. You may
have the ability to print, sort,
fold or even mail the literature, saving the SPF the
money it would have spent. Recycling -
Recycling For Charity accepts all models of wireless
mobile cellular phones, PDA’s, iPods, digital cameras,
and ink and toner cartridges regardless of working
condition.
Recycling for Charities is an easy way to benefit
the Spastic Paraplegia Foundation while helping to
maintain a safe and healthy environment.
United Way & Combined Federal Campaign (CFC) - both are plans
set up through your employer in which you can make
contributions. You
decide what amount will
be deducted from your pay check.
The contribution is done pre-tax,
which saves money. Please let family and friends know
that they can contribute with these
plans as well. Please check with your employer to see if
they participate with United Way.
If you are a Federal Employee, you can give through the
CFC #12554.
Goodsearch.com - every time you search the web using
www.goodsearch.com,
a contribution will be made to SPF. Please don't forget
to
designate SPF initially.
Visit
How to Help and contact us to get involved. Our
strength depends upon you!
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