Mitochondrial Donation – How you can help

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MITOCHONDRIAL DONATION – HOW YOU CAN HELP

 

Mitochondrial donation is an IVF technique (also known as mitochondrial replacement IVF technique, mitochondrial transplant or mitochondrial replacement) that could prevent transmission of mitochondrial disease (mito) from mother to child.

Currently this technique is not available in Australia.  AMDF is beginning to engage with MPs, senators and government officials to change government legislation to allow families affected by specific types of mito, the chance to have disease-free children. The process will involve the CEO, board members, scientists, patients and their families meeting with politicians and generating media coverage to support the campaign. To be successful, we need the help of the mito community.

How can I help?

 

Contact your local MP

Can you write to and/or visit your local MP to tell them why mito donation is important and why they should support legislative change? You don’t need to be an expert on mito donation – just tell your own story about how mitochondrial disease has impacted you or your family.  AMDF can provide you with additional information, if needed.

In 2017, mito community member Mel Macaulay met with her MP. She has written about the experience:

“I’m sure all of us within the mito community at  times have felt helpless, alone and that there is nothing we can do.  However I feel that by sharing our story, or the story of our loved ones to our local MP we can take a positive step towards making a difference in the lives of others.

“I believe that change happens when there are enough voices coming together.  What an impact we could have on the entire mito community in the future if all of us made time to speak with our local MP.  Initially I know it can appear daunting, but I find people are genuinely interested in my story, it’s something that most people haven’t heard of or even considered.  And local MP’s in particular are more than happy to  listen to members of the community – it’s their job after all!

“I’m not an expert in mitochondrial donation, but that didn’t matter, I gave my local MP the information provided by AMDF to review himself. He was more impressed that I brought the information to his attention, and asked for his assistance.  Above all, knowing that just by doing this I could help many families in the future have less pain and trauma from mito, then that makes me feel like I have made a significant impact in this world.”

Speak with the media

Mito donation has received sporadic media coverage, most recently in September 2016 in relation to the birth of the first child using the technique. Increasing public support of the technique will be crucial to changing legislation.  Media coverage is an invaluable tool in educating the general public. AMDF is looking for members of the mito community who would be happy to speak with media and help raise awareness. A thorough knowledge of mito donation isn’t necessary – we will be on hand to support you through the process and ensure you have everything you need to feel at ease.

“I’m not sure I could do that…”

We understand that speaking with politicians and the media is something that many people need time to consider. Please get in touch with us if you would like to chat about the process and the information we can provide you with to ensure you are comfortable and adequately prepared.

The more people that get involved, the more likely we are to be successful and secure legislative change.

To play your part in allowing families access this ground breaking procedure, please contact Rebecca Davis on rebecca.davis@amdf.org.au or 02 8033 4113.

The involvement of the mito community in the UK was instrumental in supporting the Lily Foundation’s successful campaign to bring about legislative change – watch a video looking at this change (6:55 minutes). Now it’s your turn!