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Mitochondrial Donation – How You Can Help

Breaking News!

Senate Committee recommends pathway to legislative change so babies in Australia do not suffer with mitochondrial disease. Read more.

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.

The Mito Foundation is engaging with MPs, senators and government officials with the hope of changing government legislation to allow families affected by specific types of mito, the chance to have disease-free children. The process involves the CEO, board members, scientists, patients and their families meeting with politicians and generating media coverage to support the campaign.

Contact your local MP

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

Members of the mito community have written about their experience of meeting with their MP.

Mia Bell

Mia was diagnosed with mito in 2013. She is an active member of the mito community and sits on the Mito Community Advisory Panel.

“I met my local and Federal MPs at the Bloody Long Walk event. They were very interested in hearing about mito and very charming (even though we had all got up super early!).

“The Mito Foundation staff rang their office to arrange a follow up meeting. It took a while to arrange. I was quite nervous about going, but the Mito Foundation provided me with some information to take along and three of us from the Mito community attended together. I found my federal MP interested and charming. They are used to meeting constituents and putting them at ease.

“I knew we only had 20 minutes of her time, so I prepared before the meeting and we got straight to the point. I had worked out in advance that she had nine constituents with mito. We had a quick photo opportunity afterwards and my MP posted this on her Facebook page with some info about mito. She re-posted it at the end of the year as part of her “Year in Review”, so we got double the exposure.

“Based on how well that meeting went, I was then confident to meet with my local Federal Senator (again with another person from the mito community). The Mito Foundation arranged this for us. This time I was more confident to speak about my mito journey and better prepared for the questions we were asked. I was impressed by how hard our politicians work and how interested they are in assisting constituents.”

 

Mel Macaulay

Mel MacaulayMel received a diagnosis of mitochondrial disease 17 years after she first showed symptoms.

“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 the Mito Foundation 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.”

Kathleen Elmer

Kathleen Elmer with her husband and grandchildrenDistance hasn’t stopped Kathleen, who lives in Victoria, for advocating for her grandson, Aidan, who lives in Perth and has mito.

“Recently I met with my local Federal MP to discuss mitochondrial donation.  The Mito Foundation asked me if I would like to be involved in a meeting to talk about how mito impacts upon my family.  I was provided with all the necessary background information I needed, so I felt prepared.

“I hadn’t met with Joanne Ryan before; she was really interested in how mito has affected my beautiful grandson, and very keen to learn about mitochondrial donation. Joanne has even asked to meet with my grandson when he is here at Christmas time.

“It was easy for me to go and I hope it will allow other Aussie families like ours to have children free of mito.  I really encourage others in the mito community to meet with their local Federal MP. If we all stand together we can raise awareness of mito and help get legislation around mitochondrial donation changed.”

Speak with the media

Mitochondrial 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. The Mito Foundation is looking for members of the mito community who would be happy to speak with media and help raise awareness. A thorough knowledge of mitochondrial 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 Services Team Leader Rebecca Davis on rebecca.davis@mito.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!  


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