Mito Community Advisory Panel (MCAP)
Mito Community Advisory Panel
The Mito Community Advisory Panel has been established to improve communication between AMDF and the mito community. It will provide us with feedback regarding priorities to invest resources. We will in turn use the panel to validate our ideas on support that may be provided to the community.
Structure of the panel
The panel includes patients, carers and parents from each state. We want it be as diverse as possible with both sexes, a range of ages and a variety of mitochondrial disorders represented.
The duties of the panel members are to:
- Act as a representative for AMDF in their state
- Communicate with members of the mito community
- Attend quarterly meetings held via teleconference, which will be held approximately two weeks before the AMDF Board meetings. Agenda and minutes from these meetings will be made publicly available.
- Present findings from their meeting to the AMDF board meetings in February, May, August and November.
The Mito Community Advisory Panel members are:
- Mia Bell (SA)
- Fiona Elmer (WA)
- Pam Hausler (SA)
- Melinda Macaulay (QLD)
- Patrick Moult (NSW)
- Haydn Quirk (VIC)
- Rene Raichert (TAS)
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. Mia runs the South Australian support group for AMDF and volunteers on the Patient Support Network
Contact Mia – 0408 084 677 or firstname.lastname@example.org
Fiona Elmer – Western Australia representative
Fiona is a geologist with a research background and has two children under the age of four. Since her eldest child Aidan was diagnosed with mito in October 2014, both Fiona and her husband Dan have been involved with several events to raise awareness of mito and funds for research into treatments and cures.
Fiona has played a vital role in organising Support Group Meetings in Perth and continues to work in the community. 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.
Contant Fiona – 0417 383 940 or email@example.com
Pam was diagnosed with MELAS in 2011. As she has grown older, Pam has developed a tremor in her hand, asymmetric deafness, brain fog and occasional instability of her gait.
Pam’s daughter Shayli passed away at age 19 from MELAS, as did her mother at age 89. Other relatives also likely died from this devastating condition, although they were not formally diagnosed.
Pam has been an AMDF volunteer for many years, and is dedicated to raising awareness.
Contact Pam – 0419 682 976 or firstname.lastname@example.org
Mel showed symptoms of mito for 17 frustrating years before being diagnosed with Chronic Progressive External Ophthalmoplegia (CPEO) in 2011.
She operates her own coaching business and is a motivational speaker where she often speaks about rising above our own self imposed ‘dis-abilities’ and limitations regardless of personal circumstances.
Mel and her husband Andrew wrote the training program for the Bloody Long Walk, and she also enjoys volunteering and participating in the event. In 2016 Mel and Andrew cycled 1,350km unsupported from Hervey Bay (QLD) to Circular Quay, Sydney (NSW) to raise awareness and funds for AMDF.
Mel understands how frustrating, isolating and misunderstood this condition can be and has found AMDF support services extremely beneficial.
Contact Mel – 0401 940 862 or email@example.com
His wife Lisa, after three years of increasing illness, was diagnosed with Kearns-Sayre Syndrome (KSS) in 2010. By 2014, Lisa’s condition had worsened, and in early 2015 they sold their property in the Southern Highlands and moved back to Sydney.
Patrick is an AMDF volunteer helping with the Stay in Bed Day and Bloody Long Walk campaigns and carrying out database maintenance. He is also Lisa’s full-time carer.
Haydn Quirk – Victoria representative
Haydn and his wife Anne have two teenagers Lani, 16 and Damon, 14 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 two years ago and has chronic progressive external ophthalmoplegia (CPEO). She is currently [as of 2017] is in Year 11 and wants to be a primary school teacher.
Contact Haydn – 0408 103 578 or firstname.lastname@example.org
Rene and her partner first learned of the devastating effects of mitochondrial disease when their son, Ollie, was diagnosed with Leigh disease before his first birthday. Their little boy, with the world at his feet, died less than a year later in 2014.
They have experienced the isolating effects of mito as they had limited access to medical treatment and social support services in Tasmania. They felt the AMDF helped to ease their sense of isolation and loneliness and Rene hopes to do the same for others.
Contact Rene – 0407 485 613 or email@example.com
We would like to include people living in rural Australia on the Mito Community Advisory Panel. If you are interested in representing your area, please contact Services Team Leader Rebecca Davis on (02) 8033 4113 or or firstname.lastname@example.org