Want to help?

I am often asked by people how can they help us in our campaign to stop Spinal Muscular Atrophy and other recessive genetic disorders through making genetic carrier testing routine and subsidised. There is actually quite a lot you can do, such as:

1. The first thing you can do is simple - just support us. Some days we are overwhelmed with the emotions we feel in missing Mackenzie, and we get strength from others through messages of support.  This is what will help to push us along during those days;

2. If you are planning on having children (whether your first, second, third or more) have the genetic carrier testing. Please don't ignore the message that we are promoting in Mackenzie’s name. Don't think it won't happen to you;

3. Use any platform you have to spread Mackenzie's story and the need for genetic carrier testing before pregnancy or in early pregnancy. Whether that is by word of mouth, telling family and friends, using Facebook, Instagram or whatever platform you have access to and are comfortable using. If you aren't sure what to say please refer them to my Genetic Testing post 

4. One of the main communities we need to reach are GPs. So next time you visit your GP ask them if they know about SMA or other recessive genetic disorders like cystic fibrosis, and genetic carrier testing. If they don't know, please tell them about it;

5. Write to your State or Territory Health Minister asking them to encourage GPs in their area to learn about and recommend genetic carrier testing to their patients. We have already met with the NSW Health Minister who has been incredibly supportive and has personally written to every GP in NSW. If you want to go one step further write to the Federal Health Minister Greg Hunt stating that you agree and support routine genetic carrier testing to be subsidised by the Government; 

6. This blog is not about donations, however if you would like to make a donation I can recommend some wonderful places who do exceptional work and that have touched our lives dramatically:

·         Sydney Children's Hospital - in particular the Neuro Muscular Team led by Dr Michelle Farrar that specifically researches SMA 

·         The Royal Hospital for Women - they looked after us so well when Mackenzie was born and have continued to support us through losing Mackenzie. They have also helped us to help raise the awareness of genetic testing 

·         The Starlight Foundation - they gave us the gift of a trip to Broome straight after Mackenzie was diagnosed. They gave us memories which we will treasure forever 

If you can do even one of these things, you will be helping us to do this in Mackenzie’s name. 

Thank you all xx