The Mito Community Advisory Panel (MCAP) is an important way Mito Foundation works with and listens to the mito community. The panel includes people with mito, carers and parents across Australia representing the diversity of our mito community and a variety of types of mito.

The panel provides feedback and ideas regarding services and priorities to invest Mito Foundation’s resources. The panel is also actively involved in community events.

What is involved in being an MCAP member?

  • Be a representative for the Mito Foundation in your state
  • Regularly communicate with members of the mito community
  • Participate in meetings several times per year
  • Participate in Mito Foundation events and support activities
  • Contribute to the development of new service and funding decisions

If you would like to learn about joining MCAP, please reach out to an MCAP member (details below) or contact the Mito Foundation Helpline.

Mia Bell

Mia Bell - Co-Chair

South Australia

Originally from Adelaide, Mia was living in the UK when she was diagnosed with Mitochondrial Myopathy 3302 A>G in 2003. This diagnosis was reconfirmed in Australia in 2014.

Now living back in Adelaide, Mia works part-time and has two primary school aged children. There is an extensive family history of mito, and Mia has shared her story in aid of raising awareness of mito and in support of mitochondrial donation. Mia held the position of MCAP Chair from 2018 -2020, has run the SA support group for Mito Foundation and volunteers on the Patient Support Network.  Mia continues to be an active member of the mito community.

Contact Mia – 0408 084 677 or miajhbell@gmail.com

Kim Harrison

Kim Harrison - Co-Chair

Queensland

After many years of seeing various doctors and specialists, Kim was diagnosed with mitochondrial myopathy (adPEO with multiple mtDNA deletions) late in 2018. She had been working full time as a Business Manager at a local College on the Sunshine Coast for many years. In 2021, Kim was sad to leave this position due to a decline in her condition.

The year after her diagnosis, Kim showed her support for the mito community by completing 3 Bloody Long Walks back-to-back. Kim continues raising funds and awareness with her family by taking part in subsequent Bloody Long Walks, Virtual Bloody Long Walks & Stay In Bed Days. Kim loves getting outside and spending as much time with her family and friends as possible.

Contact Kim – the_pringles@bigpond.com

 

Fiona Elmer

Fiona Elmer

Western Australia

Fiona Elmer lives in Perth and is a geologist with a research background. Since her eldest child Aidan was diagnosed with mito in October 2014, both Fiona and her husband Dan have been closely involved in the Mito Foundation through events raising awareness of mito and funds for research into treatments and cures.

Now mum to three children, Fiona has plays a vital role in organising support group meetings in Perth and represents the mito community on the Mito Foundation Board. She wants to use her experiences to help others going through similar life events in any way she can. She realises that it can be hard and at times lonely being a parent of a child with a serious health issue and is willing to talk openly about her experiences.

Contact Fiona – 0417 383 940 or fionaelmer@yahoo.com.au

Rebecca Patterson

Rebecca Walsh

Queensland

Bec was diagnosed with mitochondrial disease (mito) in 2016, after suffering ongoing symptoms for a number of years. She lives on the Sunshine Coast in Queensland and takes every opportunity she can to raise awareness of mito. This includes her blog “Girl with the Green Bow” that launched in 2017 to track her journey living with mito.

Bec has collaborated with Alice Gibson, owner of Mito Merch and launched her own “Bow collection” range of clothing.

Bec understands how isolating living with mito can be.

Contact Bec – 0419 231 505 or girlwiththegreenbow@gmail.com

Haydn Quirk

Haydn Quirk

Victoria

Haydn and his wife Anne have two teenagers Lani, 22 and Damon, 20 and live in Langwarrin, approximately 50kms from Melbourne’s CBD. Haydn is the Metering Contract Manager for South East Water and volunteers on the Langwarrin Junior Football Club committee.

Their daughter Lani was diagnosed approximately eight years ago and has chronic progressive external ophthalmoplegia (CPEO).

Contact Haydn – 0408 103 578 or hpaquirk@hotmail.com

Lani Quirk

Lani Quirk

Victoria

Lani was diagnosed with Mito CPEO+ at 14 years old. She lives with her parents, her puppy Freddie and her younger brother.
In 2017 Lani completed The Bloody Long Walk in Melbourne and received the Mito Foundation Youth Award for her efforts.
Now Lani is 22 years old and the youngest member of MCAP. In recent years, Lani's father Haydn dedicated his time to MCAP to represent the mito community. Now it's time for Lani to take over the reins and be the voice for young adults!