The Mito Community Advisory Panel has been established to improve communication between the Mito Foundation 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 the Mito Foundation in their state
- Communicate with members of the mito community
- Attend quarterly meetings held via teleconference, which will be held approximately two weeks before Mito Foundation Board meetings. Agenda and minutes from these meetings will be made publicly available.
- Present findings from their meeting to Mito Foundation board meetings in February, May, August and November.
The Mito Community Advisory Panel members are:
Mia Bell (Chair)
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 Mito Foundation and volunteers on the Patient Support Network
Contact Mia – 0408 084 677 or email@example.com
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 firstname.lastname@example.org
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 a Mito Foundation volunteer for many years, and is dedicated to raising awareness.
Contact Pam – 0419 682 976 or email@example.com
Melinda Macaulay (Deputy Chair)
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 the Mito Foundation.
Mel understands how frustrating, isolating and misunderstood this condition can be and has found the Mito Foundation support services to be extremely beneficial.
Contact Mel – 0401 940 862 or firstname.lastname@example.org
New South Wales
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 a Mito Foundation 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.
Shelley and her husband James immigrated from South Africa in 2010 to start their lives in Tassie, leaving their family behind. Shelley is a psychologist working in the disability field and specialised behaviour support, having a passion for helping people. In 2016, she was diagnosed with MELAS, having recently lost her mother at age 63 and brother age 34 to mitochondrial disease. She currently has diabetes, bilateral hearing loss and a heart condition.
Shelley assists where she can to support the Mito Foundation with awareness week and advocating for legislative change to make mitochondrial donation legal in Australia. She is more than happy to be contacted to talk about her experiences and assist the Mito Foundation community where possible.
Contact Shelley – 0438 183 111 or email@example.com
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
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 for 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 email@example.com