The Australian
Adhesions Support Group
Working hand in hand with countries around the
world to bring the pain of adhesions to the attention of all.
“Spirit of Awareness Campaign 2004”
|
Joanne Eslick Founder The Australian Adhesions Support Group |
Anthea
Nesbitt
|
“Spirit of Awareness”
It is sad to think that in 2003 we must inform
sufferers, families, medical professionals and the wider community of such an
insidious disorder. Due to the mindsets
within the medical community diagnosis has been difficult if not impossible and
getting help with cohesive treatment and long term care has been close to
impossible for most.
We have found some of the most common symptoms
of ARD are suffering, extreme pain, lack of information, loneliness and most
struggling with personal and family relationships as well as financially. So in the “Spirit of Awareness” we hope to
provide the basic tools and outlines for you to help bring the faces of ARD to
the attention of everyone around the world.
Last year we started the “Awareness campaign”
getting stories and letters to the Editor of local newspapers published and a
few news stories and interviews onto the radio and local television. NOW we need to intensify that campaign and
add to it the Political push required to obtain recognition at the highest
levels.
I
wish you well in your efforts to let the world know about ARD,
Shane Eslick
Business
Manager
The
Australian Adhesions Support Group
Dear
ARD Advocate,
Thank
you for your interest in helping the volunteer coordinators of Bombobeach.com’s
“Spirit of Awareness Campaign”. Without the help of individuals like YOU it
wouldn’t be possible to spread the word about adhesions and the devastating
affect this horrible and painful disease has not only on the victim, but the
victim’s family and indeed the community.
If
you have looked at the “Press Gallery” section on bombo (under the sub heading
of Communication on the site navigation bar) you will already know that some
sufferers have succeeded in getting media attention for our cause. However, for this to be a truly successful
campaign we need articles, letters, and television and radio interviews right
around the
The
information contained in this package is Stage One of our
campaign. So as not to overwhelm you and
make it all look too hard, we have broken the process into easy to achieve
steps allowing you gain experience and confidence in your abilities to approach
the media, once you have “mastered” contacting the media” we will be happy to
assign additional projects to you, if you are interested in being more involved
with the ongoing campaign
What are our “Awareness Campaign Goals”?
- The
whole purpose of this campaign in to increase public awareness firstly
about (ARD) Adhesions Related Disorder and to show the public that anyone
is susceptible to this horror and that we aren’t warned about adhesions
when considering surgery
- We
also want to stimulate discussion in the community and within the medical
profession,
- Then
a public education program for sufferers and their families so that they
better learn to cope with this disease and it's ramifications and to give
them the necessary physical and mental tools required to cope with this
disease on a daily basis. This
includes better pain management options, assistance in gaining social
security benefits, informed consent regarding the dangers of adhesions
prior to surgery.
- Naturally
long term, the goals include increasing research into the hows, whys and
wherefores of this illness, finding better solutions for preventing
adhesions at the time of surgery and to have the ability to eradicate them
from a persons body when they are discovered because of other adhesions
stimulus – such as infection or trauma.
How can I help?
- You have already started
helping by participating on the message boards at “The
beach”(bombobeach) as you all now affectionately call it. It is important that we continue our involvement
in these message boards because often they provide the first contact an
individual has with a fellow suffer and often the first time they discover
proof that what they are experiencing isn’t “all in their head” but
something that is very real, painful and quite often debilitating.
It is important that when we greet newcomers to these message boards that we don’t give them a message of “doom and gloom” but offer a positive opportunity for these people to interact with fellow sufferers and share experiences and give support, understanding and encouragement to them when facing what we often find an overwhelming situation. - Another worthwhile project is
our media awareness campaign, which was launched in September 2002
with a “Letter to the Editor” campaign that quickly snowballed into
something much more!!
Anthea Nesbitt our US Coordinator for bombo managed to take the campaign just a few steps further and was able to see several articles printed in various newspapers and inspired other beach buddies and IAS members to do the same thing!
Not only did we end up with newspaper articles, we ended up with one of our beach buddies, Browkenwing finding much needed medical assistance as well as a special Christmas for her family sponsored by generous good Samaritans
So whether you are trying to get your own fundraising campaign going to raise funds for an overseas trip for treatment or just furthering the awareness cause of ARD, Anthea tells us that if SHE can do it ANYONE can! So here in Anthea’s own words are her ideas on how to approach local media organizations within your local area:
”Pick up the phone, don't be scared, what is the worse that can happen???? I have had reporters say "NO" and hang up on me, well, you just find another...doesn't compare to the PAIN I have on a daily basis...play the odds. Sooner or later you will find one that will say "Wow, never heard of ARD, might be an interesting story”!!!!! Just start with your local or community paper, they love this kind of story...and be persistent!!!! Don't give up because you will never know the taste of sweet victory if you do (give up that is). It is a GOOD feeling of accomplishment, a lot better than not ever knowing. Then when you wake up in PAIN the next day you can at least feel good about something other than popping pills. Trust me on that one!!!!!”
- Another really important way
you can be involved in the “Spirit if Awareness” campaign is to get
involved on a political level. It
is as simple as contacting your local government representative. Whether you are in Australia, New
Zealand, USA or Canada or any where in the world, you have a State and
Federal Government representative that you can contact about the need for
recognition of ARD. It is important to have at least a little understanding
about your countries system of government.
In the US for example, the best place to start is with your
congressional official on a state level. In Australia start with your
Federal member of parliament within your electorate.
In Australia simply look up the office and
contact details for your Federal Member of parliament, ring his/her office and
make an appointment to go and meet with him/her.
You will need to take with you copies of:
- Information about adhesions,
- Relevant statistical data, facts
and published articles in medical journals.
- Published articles within
Australia and then around the world, again emphasising that it is a global
problem, not just an isolated condition.
- Samples of Australians
suffering with adhesions and their experiences finding suitable medical
treatment for their condition [include your own story here, but keep it
brief and in point for if possible at this stage]
·
Give
examples of any relevant legislation already recognised in other
countries. [Here we can use the
examples of the recognition of ARD received in Wisconsin and New York State of
the USA]
In the USA, again our Anthea is picking up from the lead and
along with our beach buddy Dawn Rose. They have picked up the challenge and
started their personal campaigns to gain awareness with their state
congressional officials in the USA.
So here again in Anthea’s own word’s is how YOU too can start to lobby
government about improving conditions on a number of issues for ARD sufferers
”To contact your legislators...Dawn found out and
me too...not hard it’s not hard at all...THIS IS HOW YOU DO IT...go to...
www.house.gov you can look up your member of the U.S. House of Representatives.
Then you click on your Representatives page and get her/his contact information.
Each member of the house has a home district office staffed with caseworkers
whose job is to talk to their constituents [essentially WE are their bosses!!!]
There is at least one person in the home district office that focuses on health
care. Ask for that person.
Get your talking points ready and TALK. Set up an appointment if necessary and
meet in person.
Some of our goals are:
- For
states to recognize ARD and increase the awareness of this disorder...
- To
better educate the medical community, to gain better pain management for
those suffering from this [can include your own personal horror stories
here if they ask]
- They
may also want to know IF you personally have been screwed by any state
agency regarding your benefits if on assistance,
- Informed
consent form before a person undergoes surgery...THAT is real important
too...
- Better
funding for research
- Better
anti-adhesion products for the Doctor to use during surgery...
these are a few that I included in my talking points.... So there you go...We are building visibility and giving a name and face to those of us affected by ARD. IF you are able to contact your representative, PLEASE let us know.”
IT IS
IMPORTANT TO EMAIL EITHER ANTHEA OR JOANNE AND GIVE REGULAR UPDATES ON YOUR
EFFORTS AND WHO YOU HAVE MANAGED TO CONTACT AND WHAT RESPONSE YOU RECEIVED FROM
THAT PERSON. THEY WILL THEN OFFER YOU
ADVICE AND ENCOURAGEMENT ON HOW TO TAKE THE CONTACT TO THE NEXT STAGE.
We have plenty of information, statistics,
sample stories etc that we can give you to help you collect your thoughts
together before you start your personal campaign in your area. Also remember that Anthea and I are just an
email away and ready and willing to do anything we can do to help you.
It is important that you inform us of every contact
you make, this is so that we can map out where contact has already been made so
that if more than one ARD sufferer in any area starts a campaign, we can bring
each of you together to coordinate your efforts making life much easier for you
and for us too! Also there will always
be a formal letter from bombobeach sent to the media outlet or the politician
you have contacted to back you up and to help validate your efforts.
If you need help with writing any letters or
perhaps need some help with what to say when you contact someone by telephone,
just email either Anthea at nesbittan@yahoo.com
or myself at joanne@bombobeach.com
and we will be able to supply you with a more comprehensive kit. In order to provide the kit we will need your
mailing address so that we can send you our brochures and/or documents
explaining adhesions as well as the work we do in supporting sufferers and
their families on the beach. This will
naturally include copies of sufferers’ stories (with their permission
naturally), samples of published articles and Letters to the Editor as well as
helpful phrases and dialogues to use when talking to a media or government
representative when you are trying to set up an appointment or create interest
in our cause.
I wish you the best of luck and I look forward
with eager anticipation to your reports on the effort and the contacts you
make!
Love & warm gentle hugs,
Jo
Joanne Eslick
Founder
The Australian Adhesions Support Group