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:
As the Champion of The Bloody Long Walk 2019 series, Noah has openly shared his personal story to the public to raise awareness of mito and motivate fundraising. Our Bloody Long Walk community has absolutely fallen in love with Noah’s cheeky personality and have 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 contributions to raising awareness of mito and supporting the community are nothing short of phenomenal. She held a pivotal role in organising the Perth 10th anniversary gala dinner (alongside Fiona Elmer) to mark the progress made to date in combatting mitochondrial disease. She also secured many high-calibre locations for this year's Light Up for Mito, a global initiative that raises awareness of this debilitating disease. Some of these monuments included Optus Stadium, Council House and Bell Tower.
Dr Nicole Van Bergen worked as the lead laboratory researcher at Murdoch Children’s Research Institute (MCRI) as part of an international team that identified the underlying cause of a rare brain disorder in children. Together they identified 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’ is 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. This led to her appointment to the NHMRC committee that is now tasked with executing several priorities allocated by Government in response to the Senate Committee’s report on the possibility to introduce mitochondrial donation to Australian families.
Dr Rocio Rius has conducted important research into biparental inheritance of mitochondrial DNA. The research found mitochondrial transmission to be an unlikely occurrence between father and child, and so helps avoids unnecessary reform to clinical practices.
John is a passionate advocator for Mitochondrial Donation. The Mito Foundation would like to recognise his persistence in engaging numerous members of parliament to ensure that Australian families are awarded the opportunity to raise 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 the interests of the mito community. In addition to this, she has co-organised the 10th anniversary event in Adelaide, contributed to the mitochondrial donation advocacy campaign and advised the Adult Advisory Council Team (UMDF's equivalent to the MCAP).
Preeti has exhibited a relentless supply 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 globally with her truly inspiring video on storytelling platform Cuecard. She and her family organised a Superhero Disco Fundraiser, and she has also recruited a team of around 60 walkers (including members of her local gym) to join her team in The Bloody Long Walk in Perth.
Tom Dow is a regular of The Bloody Long Walk and has tackled our Newcastle course as well as both Sydney courses. Each year Tom is supported by a very special group of friends, not only along the walk, but in his daily life. Tom has experienced surfing and a helicopter ride this year, thanks to these friends that are determined to help Tom get the most out of life whilst raising much needed awareness of mito. At this year's Newcastle Bloody Long Walk, NBN news was also 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 Hugh's memory and finished as the highest Victorian fundraisers of the year. This is in addition to the numerous fundraising initiatives the school has held in recent years. We want to make special mention of Annabel Dryan, Chris Dash, Keegan Vickers and Adam Blunt for all their efforts.
Rebecca has courageously presented workshops on a patient's perspective of mito to multiple groups this year, including the University of Queensland (2 hour lecture), James Cook University (2 hour lecture) and live on radio in Noosa, QLD. She is also 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 the pinnacle of support for the mito community. She is a relentless advocator for mitochondrial donation, sharing her personal story to highlight the importance of this procedure. She's provided subject matter expertise to the foundation for the recent Mito Foundation Mental Health Initiative.
As a trained Psychologist, Shelley regularly offers her expertise to mito patients pro bono and is passionate about assisting the foundation to improve the education of medical professionals who offer support to mito patients.
Jacqui and David were fundamental in setting up the Melbourne Support Group. Local community networks are massively important to the wellbeing of people with mito, as the sense of isolation that comes with having a rare disease makes a tough situation even tougher. We're grateful to the efforts of Jacqui and David.
Annaliese is a para-athlete who has been asked to represent Australia in the INAS Games. With strong goals ahead of her, Annaliese is also striving for the Paralympics. It is due to this determination to "let nothing stand in her way" that we recognise how inspirational Annaliese is.
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) he is equipped to provide the complex care that's needed.
Returning for the 2019 edition of Melbourne's Bloody Long Walk, Team Maeve achieved an exceptional result as one of the top fundraisers. We appreciate all their efforts for young Maeve and acknowledge their support outside of the Bloody Long Walk, including support from the Little Olive Cafe and their advocacy work.
The team at Raywhite New Farm have generously 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. In December 2018 the lunch raised over $100,000 to support people with mito and bring us closer to urgently needed cures.