This PSA will be running on the CBS Television Network through
the end of February. It's going to run as time is available.
Altek Media donated the design and production with
assistance from Mr. and Mrs. Hardy Brown of Black Voice
News.
New
-
SPF in Times Square
Press Release
Media Kit
(Adobe
Acrobat needed)
 The
PLS Awareness Month Committee is working hard implementing
virtual and live activities as well as corporate and
strategic partnerships for the month of February. Keep an
eye out for media recognition and new on-line listings
across the country recognizing the Spastic Paraplegia
Foundation and Primary Lateral Sclerosis throughout the
Congressionally designated month. We thank Congressman Baca
and his staff for their support in sponsoring this
legislation. In addition, we recognize the official honoree
for PLS Awareness Month Hardy Brown,
and his family, for continuing to support our efforts. The
goal of PLS Awareness Month is to educate the public and the
medical community about PLS and increase visibility about
this cause, HSP, the challenges of upper motor neuron
disorders, increase interest and find a cure.
- We encourage our members to contact the local media , present the
media kit
information and ask them to do a story or write an article about PLS, the
challenges of upper motor neuron disorders and SPF's efforts during PLS
Awareness Month 2009.
- SPF will reach out to school systems across the country in
conjunction with Black History Month encouraging students to learn about
Hardy Brown and his efforts as a Black entrepreneur, publisher, and
social-political activist. The effort will feature his challenges and
efforts as an individual with PLS who is a true national inspiration.
- SPF Board Members will be visiting Capitol Hill in Washington, DC during
the month of February. The group will be speaking with several members of
Congress about the challenges and efforts to raise money and encourage
research to find a cure for upper motor neuron disorders. This SPF Advocacy
Day will also be an effort to encourage Congress to pass legislation
designating new funding to increase upper motor neuron disorder research
nationwide.
Join the PLS Awareness Month 2009 Cause on
Facebook (instructions) and contribute
your support either in-kind or in dollars. Tell family, friends, co-workers and
associates about the Spastic Paraplegia Foundation and spread the word. This is
everyone's opportunity to reach out and help the entire PLS/HSP community become
front and center in the medical community across the country.
By Hardy Brown
Ed. Note: Hardy Brown was
the inspiration for Rep. Baca
proposing PLS Awareness Month.
I first noticed a limp in my left
leg back in the summer of 1999
and was diagnosed with ALS in
October 2002. Then in 2007 I was
given the diagnosis of a second opinion of PLS from
UCLA. I have held on to my faith which has sustained
me and my family which is a story in itself.
While I have moved from a walking cane, to a walker and now
a power chair I still write a weekly column for the family
newspaper (www.blackvoicenews.com),
head up a statewide organization and am treasurer to
another. I shared a story recently with the community that
this condition has forced me to reset my priorities. I said
in this satellite age we have our signals interrupted by
storms sometimes knocking the picture from our televisions.
When that happens the satellite has to reposition its self
for the picture to return. The thing we must remember is the
television, the satellite and the program still exist, so we
just wait until the repositioning has taken place and the
picture returns. Well with the notification of ALS then PLS
I did not
give up. I have repositioned my way of living while waiting
for a full healing from God. As a person I like
to go, but since I have physical limitations I now send my
wife and children. I love to talk but since I have
speech limitations, I get my wife and children to talk
instead, especially since they love to talk.
I have trouble swallowing food so I make sure I concentrate
while eating. I eat before I go out because any distraction
can lead to food getting lodged in my throat. I also notice
that being in crowds while in the power chair makes it
harder to breath. I also had to finally move downstairs this
year so it would be easier on my wife.
My word to those who have PLS is, “Don’t give up because you
still have much to offer.” My faith teaches me that God can
remove any thorn in a person’s side or He can leave it in
while giving you the grace and strength to endure the thorn.
So far I still have the thorn (PLS) but I have not let it
stop me from moving forward with the work I have to do. It
has allowed my family, friends and community to move on with
living while getting inspiration from the situation. It is
allowing others to reposition their thinking in facing their
situation.
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