I am so excited to share with you that the On-Line Survey Project has made significant progress in the past month. The survey is drafted, the technology is ready for testing, the advertising materials have been prepared and the ethics application has been submitted. Now we wait!
Please - don’t stop reading …. don’t disengage ….. don’t think this isn’t for you ……don’t think that you won’t have time!
The team behind this project is very skilled and very experienced. This opportunity to define the impact of our treatment options is important to the MG community in so many ways and information from the project will flow quickly.
I can hear people saying
- I don’t do technology so this is not for me
- I am tired of taking on-line surveys
- I am too busy
- I am too old to be bothered.
Our community needs everyone to participate. We do not want any demographic or any situation missed. Every individual history is important. Our community will benefit. Let’s help ourselves and those coming after us.
For people who don’t have access to technology or find it tiring, it is time to ask for help. Maybe a family member can assist, perhaps taking a cake into a neighbour would do it, local libraries can help, for some people their health care workers make things happen or there may be an "MG buddy” at the end of a phone waiting to help out. We need to work as a community on this project. The MAA is a partner in this project and this means that our MG Community has an obligation to make this a success.
More information will follow once approval has been finalised. Please do make contact on 1800 802 568 or email@example.com if you have ideas for supporting others who may have difficulty contributing.
Susan White, Chairperson
Follow the work of the Alliance by registering at the website www.myastheniaalliance.org.au