> AMERICAN RSDHOPE UPDATE - THURSDAY OCTOBER 27, 2005
>
>
> MEDIA UPDATE - RSD AWARENESS
>
> WE MIGHT HAVE CAUGHT A BREAK FINALLY!
>
> So many of us have been writing to so many shows for SO long about our
stories,
> lives, experiences, etc.
>
> Many of you have been involved in our Media Awareness Program for the last
6 or
> 7 years now, where we have targeted different shows in different months
and
> tried to get as many people as possible to write to them with their story.
>
> What have we been told over and over? "We want HAPPY stories, not sad
ones!"
>
> We tried to tell them that most of the stories surrounding RSD aren't
happy.
> That dealing with a horribly painful and in many cases family-destroying
disease
> like RSD is not a HAPPY thing.
>
> But we also emphasized that we did have happy stories within the
community,
> stories that told of people finding help on the internet, finding others
when
> they thought they were alone, learning they weren't crazy and that there
was
> hope! But it wasn't enough.
>
> Well guess what? We have a great story! A VERY HAPPY story! And this one
may be
> our ticket to get on a nationally syndicated daytime television show that
> millions watch every day from coast to coast!
>
> As many of you who follow along our organization here might remember, we
had a
> young lady by the name of Lynn Markley who wanted to do a very special
School
> Project, a very ambitious one. Lynn wanted to take her school year and
raise
> $10,000 for American RSDHope's Research Fund, HOPE FOR TOMORROW, and
hopefully
> raise Awareness along the way!
>
> Lynn's Aunt Lori had RSD. Lori passed away a couple of years ago due to
> complications from the RSD. Some of you probably knew her as she was part
of the
> RSDHope family, and I was very happy to have known her myself. She was a
brave
> woman who fought through some very tough personal circumstances as well as
> dealing with her RSD, as many of us have. But she always tried to put on a
smile
> and have a kind word when you talked to her.
>
> One person she shared a special bond with was her niece, Lynn.
>
> You can read all about Lynn's Project by going to the following page;
>
> http://www.rsdhope.org/Showpage.asp?PAGE_ID=64&PGCT_ID=2924
>
> Basically, she decided she was going to honor her Aunt's memory by raising
> $10,000 for American RSDHope's Research Fund in 12 months while raising
> Awareness of RSD at the same time. She would spend a year doing this
project.
> She not only reached but she surpassed her goal!
>
> She also accomplished something Lori had been working on before she passed
away.
> Lori had been working with Keith McCall who is a Representative in the
State
> House of Pennsylvania and with the information that Lynn passed on to him
from
> our organization, Representative McCall introduced and passed a Bill in
May for
> an RSD Awareness Month for PA!
>
> Lynn has even been recognized by President and Mrs. Bush for her work on
behalf
> of RSD Awareness and American RSDHope.
>
> But I digress, back to the Media Project.
>
> ------------------------------------------------------------
>
> Lynn has an amazing Grandmother, Lori's Mom, Maureen Markley. Maureen and
I have
> become very good friends over the last year while helping to coordinate
this
> project (along with Mom O and Karen), and she is a sweetheart. She, and
the rest
> of Lynn's family, have worked tirelessly right beside Lynn for the last
year to
> make all of this happen and continues to work.
>
> Maureen has been pestering Montel to have Lynn on his Show. To share her
story
> of her Project, of her raising money for American RSDHope's Research Fund
"HOPE
> FOR TOMORROW".
>
> WELL IT PAID OFF!
>
> She got through to a Producer who wants to put Lynn and Maureen Markley,
and the
> Director of American RSDHope, Keith, on one of his upcoming Health shows
and
> talk about this project, our Research Fund, the American RSDHope
Organization,
> and Reflex Sympathetic Dystrophy. They want to hear about this young
woman, her
> Grandmom, and our organization and how we have helped people with this
disease!
>
> The Producer said what we have to do now is be the squeaky wheel. She said
they
> need to hear from the people in our organization so that this topic can be
heard
> sooner rather than later, how RSDHope has helped you in your battle with
RSD and
> how important raising awareness of our disease through a show with a
national
> distribution like Montel's has, would be. Include our website if you could
so
> they can go there for further information. Not because we are the only
website,
> but again, to shoot for the same overall theme. To pound into their heads
the
> same names over and over.
>
> The more emails and letters we can send to them about this specific topic
the
> more likely we are to get on more quickly.
>
> We need to bombard them with emails and letters, so many emails and
letters they
> will see them in their sleep, lol.
>
> Also, so the Producer said to make them stand out it would help if in our
emails
> and letters we all used the same SUBJECT Title, the EXACT SAME WORDS,
>
> "RSD - THE MOST PAINFUL CHRONIC PAIN THAT EXISTS TODAY!" - AMERICAN
RSDHOPE -
> www.RSDHope.org
>
> Now, I know it isn't easy for everyone to type and/or write. But PLEASE
folks,
> we have 1600 people on this email update list. Many of you are members
of, or
> Leaders of, other support groups, Bulletin Boards, chat rooms, etc., where
you
> come in contact with hundreds of other RSD patients and loved ones, PLUS,
you
> all have loved ones who could type/write.
>
> With all of these people we can really hit them with a whole lot of emails
and
> letters. we need to do this as quickly as possible so they come as closely
> together as possible.
>
> LET US TARGET MONDAY AND TUESDAY as the days to email the show. that will
give
> everyone time to share this email with their friends, family, support grou
p
> members, Bulletin Boards, and so forth. Feel free to post it verbatim.
>
> REMEMBER; The Producer we have made contact with will be looking for
emails
> with that Subject title above. Please have everyone use the same words.
We have
> worked a long time to get this kind of National exposure on a show with
the kind
> of distribution Montel has, we need to capitalize on it.
>
> Now, you are wondering what you should put in your letter? Tell your story
in
> your words. It would be of great help if you mentioned RSDHope, if we
helped you
> along the way since they will be looking for that BUT ONLY if we have
helped
> you. Please understand this is not an ego trip, this is not about getting
> publicity for our organization. Talking about American RSDHope is simply a
means
> to an ends at this point. It is part of the story that is getting us on
the air,
> it is Lynn, Lori, and Maureen's story that is getting us on the air.
>
> We at RSDHope were blessed to have helped Lynn and Maureen wherever we
could and
> the money they raised for our Research Fund will help all RSD patients.
The
> bottom line here is we will be able to get on National Television and talk
about
> RSD! Let people know about this disease, let patients out there know there
IS
> help, they aren't alone, they aren't crazy, and it's not in their heads,
and
> most importantly ... there IS Hope!
>
> Please be a part of this, help us in this cause. It could be your letter
that
> catches Montel's eye and moves him to get us on right away, it could be
your
> letter that gets read on the air, it could be you that they ask to
accompany us
> on the air, it could be what you write in your email or letter that
touches the
> heart of someone listening that moves them to seek help for their pain.
>
> Here is how to write Montel!
>
> http://www.montelshow.com/show/tell.htm it is a short form and you have
to use
> "YOUR PERSONAL STORY" from their drop down menu, as the main subject and
then
> start off with our subject;
> "RSD - THE MOST PAINFUL CHRONIC PAIN THAT EXISTS TODAY! - AMERICAN
RSDHOPE -
> www.RSDHope.org"
> on your first line. Then they will all look the same.
>
> or write him at;
>
> The Montel Williams Show
> 433 West 53rd St.
> New York, NY 10019
>
> This method enables you to write a much longer letter.
>
> Thank you in advance everyone!
>
>
> Peace and freedom from pain,
> Keith Orsini
> Executive Director
> and the American RSDHope Team
>
> www.RSDHope.org
>
> My email address - keithone@...
>
> Main RSDHope email address - Office@...
>
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>
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> http://www.rsdhope.org/Showpage.asp?PAGE_ID=75&PGCT_ID=3138
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