SOS - A Letter to our Federal Politicians
"Together we win - Divided we beg"
Commencing May 2007, we are intent upon raising awareness for Duchenne amongst our federal politicians in the lead up to the federal election. We hope that the feedback will identify champions who will be concerned for our sons and our families in the future.
PPA is asking all members, their wider family, colleagues and friends to write to their local Federal politicians, candidates and senators in order to raise awareness for Duchenne.
We all need to lobby for world standard research, diagnostics and care. We believe that our national government in all conscience, should be keeping pace with other developed countries, given:
- the incidence of the dystrophinopathies in Australia
- the improved longevity of our youth
- promising national research and the
- commencement of a number of human trials sponsored by our associates in the UPPMD around the world.
We outline the steps for you to participate below. It is very important that we all write letters within the next few weeks, so that our leaders can appreciate the size of our community and also our proactive concern for our children. This will be the first step in our advocacy campaign - we hope to follow up with more action at a later date.
6 Easy Steps to Participating
1. Read our sample letter, which we have provided as a model.
2. Take note of your local federal member and the major opposition candidates. Find out the name of your local senator. Use the links provided in the letter to find their preferred titles and addresses (or email addresses if you prefer). Please try to write to at least one person, ideally to all major candidates in your electorate and your senator (3 people)
3. Edit this letter and personalize it to suit your family and local area - but try to leave in the important information about Duchenne and the action we are seeking. Call or email any of the committee (opposite) if you have any questions.
4. Print and post the letter(s). OR you can also use the links provided to email the politician directly or fill out an online feedback form, if this is more convenient for you. If your letter(s) is very different to the sample, please send us a copy. Send us a list of the politicians you have contacted. If the opportunity presents, agree to meet or telephone to discuss your own experiences and concerns with them.
5. If you haven't heard back in three weeks, telephone and talk to them personally or to his/her office staff - ask whether they would support or guide us in achieving our purposes after the election? Arrange a face-to-face meeting if you prefer. Read our additional information for ideas. Download the Question and Answers .pdf document to prepare for your meeting.
6. This is probably one of the most important steps. Notify PPA of any feedback you received either written, telephone or face-to-face. Scan, email, telephone or post a copy or summary of the reply you receive, to us. PPA committee members will collate a report about the campaign to share with members. You see, we hope to find politicians who share our concerns - who are able to guide us to achieve our goals.
Email your letters, lists or feedback to our public discussion list for sharing your feedback with all members or simply email PPA management
OR
Forward a copy of the reply to PO Box 468, Smithfield 4878
OR
Email/telephone one of the committee to let them know about your experiences. We are all very interested to record your feedback and keep the dialogues open.
THANK YOU FOR SENDING AN SOS FOR YOUR SON(S)
