The Mito Foundation is fortunate to work with incredible individuals who go the extra mile to support people with mito. Each year we recognise some of those whose exceptional efforts have had a significant impact on the mito community.
Congratulations to the following:
Noah, as the champion of The Bloody Long Walk 2019 series, has openly shared his personal story to raise awareness of mito and motivate fundraising. Our Bloody Long Walk community has absolutely fallen in love with Noah’s cheeky personality and been deeply inspired by his relentlessly positive attitude and catch-phrase “I choose to be happy”. Noah managed to complete the final 5km of the Melbourne Bloody Long Walk with his Mum Kat and their support crew.
Tamara's contribution to raising awareness of mito and supporting the community are phenomenal. She played a pivotal role in organising the Perth 10th anniversary gala dinner (alongside Fiona Elmer) to mark the foundation's progress to date. She secured many prominent locations including Optus Stadium, Council House and Bell Tower for this year's Light Up for Mito campaign.
Dr Nicole Van Bergen worked as the lead laboratory researcher at Murdoch Children’s Research Institute (MCRI) as part of an international team which identified the underlying cause of a rare brain disorder in children. They found that pathogenic mutations in a gene called NAXD cause severe neurological damage in children after an episode of mild fever or illness. The research paper, ‘NAD(P)HX Dehydratase (NAXD) Deficiency: A Novel Neurodegenerative Disorder Exacerbated By Febrile Illnesses’ was published in the January 2019 edition of the neurology journal, Brain.
Dr Newson's research concerning mitochondrial donation was cited by the Senate Committee on Community Affairs in a report on mitochondrial donation. She was appointed to the National Health and Medical Research Council (NHMRC) committee which is now tasked with exploring the possibility to introduce mitochondrial donation to Australian families.
Dr Rocio Rius has conducted important research into biparental inheritance of mitochondrial DNA and found that mitochondrial transmission between father and child to be unlikely.
John is a passionate advocate for mitochondrial donation. The Mito Foundation would like to recognise his persistence in engaging numerous members of parliament to ensure that Australian families are given the opportunity to have a family free of mitochondrial disease.
Mia is a longstanding pillar of the mito community, As Chair of the Mito Community Advisory Panel (MCAP), she helps represent patients' interests. She has co-organised the Adelaide 10th anniversary, contributed to the mitochondrial donation advocacy campaign and advised an American Adult Advisory Council Team.
Preeti has shown a huge amount of energy in her efforts to raise awareness of mitochondrial disease. This year Preeti has bravely shared her family's story on many occasions not only in Australia but also globally with her truly inspiring video on Cuecard, a storytelling platform. She and her family organised a Superhero Disco fundraiser, and she recruited around 60 walkers to join her team in The Bloody Long Walk Perth.
Tom Dow, a regular Bloody Long walker has tackled the Newcastle course as well as both Sydney ones. Tom is supported by a very special group of friends not only along the walk but also in his daily life. At this year's Newcastle Bloody Long Walk, NBN news was deeply moved by the story of Tom and the Challenge Tom team.
Steph and her team (Steph's Superheroes) are soon to become regulars of the Bloody Long Walk. We appreciate their efforts to raise much-needed funding for mito research as well as awareness of the disease.
Sadly, Hugh Blunt lost his battle with mito this July. Students, staff and parents of Trinity Grammar participated in Melbourne's Bloody Long Walk in his memory. They were the highest Victorian fundraisers. The school has held numerous fundraising events and we want to make special mention of Annabel Dryan, Chris Dash, Keegan Vickers and Adam Blunt.
Rebecca has courageously presented workshops on a patient's perspective of mito to multiple groups, including the University of Queensland (2 hour lecture), James Cook University (2 hour lecture) and live on radio in Noosa, QLD. She is working with the foundation to develop a “Newly Diagnosed Patient Support Pack" and has recently joined the Mito Community Advisory Panel (MCAP).
Shelley has been a pinnacle of support for the mito community. She is a relentless advocate for mitochondrial donation sharing her personal story to highlight the importance of this procedure. She has provided subject matter expertise to the foundation for the recent Mito Foundation Mental Health Initiative.
Shelley is a psychologist, who regularly offers her expertise to mito patients pro bono and is passionate about assisting the foundation to improve the education of medical professionals.
Jacqui and David were fundamental in setting up the Melbourne Support Group. Local community networks are vital to the wellbeing of people with mito, as they help alleviate the sense of isolation that comes with a rare disease. We're grateful for their efforts.
Annaliese is a para-athlete who will represent Australia in the International Sports Federation for Persons with Intellectual Disability (INAS) Games and is also striving for the Paralympics. Her determination to "let nothing stand in her way" is inspirational.
We want to express a sincere thank you to Dr Naveen Joshi who is treating a mito patient with the utmost care and respect. Originally, Dr Josh was unfamiliar with mito but now (13 years later) is equipped to provide the complex care that's needed.
Team Maeve, returning for the 2019 Melbourne Bloody Long Walk, achieved an exceptional result as one of the top fundraisers. We appreciate the team's advocacy work and the support it provides to young Maeve.
The team at Ray White New Farm has held long lunch events for the past few years in support of their friends Mark and Vanessa Rotolone who lost their son Ari to mito. Last year the lunch raised over $100,000 to support people with mito and bring us closer to urgently needed cures.