Joanne Eslick Founder Bombobeach.com  Adhesions Support Group PO Box 1919, BATHURST N.S.W. 2795 AUSTRALIA		Anthea Nesbitt Co-Founder Bombobeach.com Adhesions Support Group PO Box 152 1215 Polaris Parkway Columbus Ohio 43240 USA
“Spirit of Awareness”  It is sad to think that in 2005 we must STILL 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 adhesions sufferers.  We have found some of the most common symptoms of Adhesions Related Disorder (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.  In 2002 we started the “Awareness campaign” getting stories and letters to the Editor of local newspapers published and a few news stories and interviews on 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, Warm Regards, Shane Eslick – Supporter/Business adviser Bombobeach.com Adhesions Support Group                                                                                               www.bombobeach.com	Spirit Of Awareness Campaign Goals: 1 2 3 4           Increase public awareness Stimulate discussion & debate Create a public education program for sufferers and their families Long term, the goals include increasing research into the hows, whys and wherefores of this illness, finding better solutions to prevent adhesions at the time of surgery, to have the ability to eliminate them when they are discovered because of other adhesions stimulus – such as infection or trauma. To support Women’s health needs and groups involved in diseases related to ARD such as Endometriosis, Fibromyalgia, Dysmenorrhea (Painful Periods), and Chronic Pelvic pain.

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 (click here for the Press Gallery) 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 USA, Canada and Australia.

The information below will help you to start YOUR personal campaign, just remember to keep us informed about what activities you are doing.  Remember if you are representing Bombo, then you MUST get clearance from either Anthea or myself first, especially if you are using any of the information contained in this website.  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 suggest additional projects to you, if you are interested in being more involved with the ongoing campaign.

How can I help? 

• You have already started helping by participating on the message boards here on “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 Co Founder 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 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 [www.house.gov]. 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 in the phone book, ring his/her office and make an appointment to go and meet with him/her http://www.aph.gov.au/ .

You will need to take with you copies of (documents we will be able to provide/help you with):

• 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 EIGHT states across the USA so far!  THREE of those resolutions are a direct result of lobbying from members of Bombo!]

In the USA,

NEW!!

The Pain Care Policy Act of 2005 is an important campaign for Bombo members and we encourage EVERYONE who lives in the USA to help ensure that this act is passed!  We need YOU to write a letter to your Congressional representative, we have provided a draft copy of the letter to make it VERY simple for you! Simply follow the prompts HERE to find out more!

NEW!!

ARD research funding to be included in the FY2006 Budget. The US budget will for the FIRST TIME acknowledge ADHESIONS in regards to Medical research funding and it is IMPERATIVE that we send as MANY letters of support as possible to ensure that ARD receives increasing recognition.  Once again a letter is all that we need from you… follow the prompts to find the form letter and relevant information to this exciting step forward in the recognition of ARD!

Click HERE to find the letter you need. 

It is important that we keep the continuity going once we have started the letter campaigns and one way to do this is to contact your Congressional representative via the telephone to ensure that he not only RECEIVES your letter, but acts on the request it contains.

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...A member found out and I too found out... 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 key points are:

1. For states to recognize ARD and increase the awareness of this disorder...
2. 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]
3. They may also want to know IF you personally have been denied by any state agency regarding your benefits if on assistance,
4. Informed consent form before a person undergoes surgery...THAT is real important too...
5. Better funding for research

6.      Better anti-adhesion products for the Doctor to use during surgery...

these are a few that I included in my talking points.... So there ya go...We are building visibility and giving a name and face to those of us affected by ARD.

7.      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, SO WE CAN COORDINATE THE OVERALL CAMPAIGN.  THEN WE WILL 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.com 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 anthea@bombobeach.com or myself at joanne@bombobeach.com and we will be able to supply you with more comprehensive information.  In order to provide this 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

Click here to read Brokenwings Story on her campaign of Awareness!!

  Last updated: 07/09/2005   

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