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:
It is an honour to award Mia Bell the Chairman's Award this year. A stalwart member of the mito community, Mia has contributed her passion and knowledge to multiple areas of Mito Foundation's work
Mia has made a significant impact and contribution to the Peer Support Network, assisting to shape the network, providing feedback and assisting the development of mentor information.
In our advocacy projects, Mia has helped plan strategies, shared her personal experiences, and worked with politicians and other government representatives. We have welcomed her advice and the way she holds us accountable, always focussing on the unmet needs of the mito community.
Mia continues to contribute in many aspects including as a member of the Mito Community Advisory Panel and Mito Meet-up Host for the parents' group. Mia’s contribution to the mito community becomes all the more impressive when you consider her health, family and employment commitments.
Thank you, Mia, for all your help and encouragement. It is truly appreciated and valued.
Rebecca works tirelessly to bring awareness to mitochondrial disease (mito). Her business "Girl with a Green Bow" spreads fun merchandise throughout the community, sparking a conversation.
Mito Foundation CEO Sean Murray said "Girl with a Green Bow" has been shared with me many times from a diverse range of people. They comment on how Rebecca is able to raise awareness and fundraise in dynamic and creative ways. I am delighted by the difference she is making."
Outside of Girl with a Green Bow, she was heavily involved in talking with politicians to help get Maeve's Law across the line. Her commitment to this was exceptional.
Rebecca NEVER gives up! She is an inspiration not only to the mito community or the rare disease community, but she is also an inspiration to people in general.
Ashleigh has been a tireless advocate of Maeve's Law.
Ashleigh proactively shared her support on social media and contacted politicians at every stage of the journey to legalise Maeve's Law. She worked with Mito Foundation to produce a video supporting the legislation, openly shared her personal story in the media and helped nurses learn more about mito by presenting at a Fertility Nurses Australasia education day.
Ashleigh and her brother Dane also shared their family's story with mito in support of Mito Foundation's 2022 Tax Appeal.
Joel and Sarah continually engaged with local and national media and shared their personal story to advocate for the passing of Maeve's Law. At no stage of this journey did they let up, contacting politicians across the country and lobbying for the introduction of mitochondrial donation.
Their outstanding commitment to advocacy is to be admired. We thank Joel and Sarah for putting themselves in the public domain as the faces of this campaign and for their enormous contribution to the passing of Maeve's Law.
Bethany and her partner James were dedicated advocates of Maeve's Law contributing their time and effort in many ways along the process.
They contacted politicians at every possible opportunity, worked with Mito Foundation to produce a video supporting the legislation and openly shared their personal story in the media. We thank them both for their vital contribution by conveying the real impact of Maeve's Law.
Hayley lost her ten-week-old daughter Alayah to mito in April 2022. Not having heard of mito before her own experience, Hayley was driven to spread the word about this disease in the wake of her loss. She quickly began planning a market event in her local town to be held during World Mitochondrial Disease Week. To date, she has raised $5,000, with more to come.
She has developed a strong bond with Mito Community Advisory Panel member Rebecca Patterson who will speak at the event to increase awareness of mito among the market attendees. Hayley has admirably channeled her own grief to make a positive impact on the broader mito community.
Noah continues to lead the charge as Captain of the Mito Movement, making a massive impact on our Bloody Long Walk series by sharing his personal mito story to educate participants.
He never misses a beat and sends motivational messages to walkers before every single event! This year Noah took on an additional leadership role as his school's 2022 School Captain and also shared his story at the Footy Fever debate - to a standing ovation!
Noah's award was chosen by Pat Cummins, Australian Cricket Captain and Mito Foundation Ambassador. Pat said, "Noah is a true leader and an inspiration to all captains out there. Keep up the awesome work mate!"
Dr Nabi is a Colorectal Surgeon. He has gone above and beyond to ensure the best possible results for his patient.
Dr Nabi's nominating patient said "My body has continued to respond, and heal, differently from what's expected. Dr Nabi has never once given up or shied away from treating me, even though I made his job extremely difficult. He has continued to give me the most incredible care and support, and his desire not to give up has helped me to have a better quality of life than expected. He is exceptionally skilled, and I've never met a surgeon who cares so much about his patients. "
Thank you, Dr Nabi, for the exceptional care you provide.
Fabienne is the neurogenetics nurse at Royal North Shore Hospital.
This year has brought challenges around the lack of staff to provide patient care. Despite this, Fabienne has made herself available to all patients, including her patients with mito, via phone and email. She spends hours on the phone providing advice, counselling, organising tests, helping with NDIS and disability pensions.
She provides emotional support to people living with chronic diseases and makes sure people know about trials and new treatments. She knows every patient by name and always makes time if they need help.
Thank you Fabienne taking your care far beyond your expected role.
Rachel Carlson is a Senior Occupational Therapist at Ability Action, with experience in caring for people with neurological and physical disabilities across the lifespan.
One of our community members nominated Rached for the exceptional care she provides to her daughter. "She has continued to support our daughter, as her needs have changed, and isn't afraid to advocate for our family, to ensure our daughter gets the best possible support. Rachel respects our knowledge regarding our daughter's care and is always happy to learn more about mito. She has great knowledge of the true day-to-day impact mito can have. We feel confident knowing, no matter what lays ahead, Rachel will ensure the best possible care and support is achieved."
Thank you, Rachel, for the tremendous support you offer.
Two of Britt's three children are impacted by mito. This sees Britt in and out of hospital every few months after her eldest was diagnosed more than seven years ago.
Since receiving a diagnosis, Britt has committed to entering The Bloody Long Walk every year, held multiple quiz night fundraisers and raised thousands of dollars for the cause.
Cheryl advocates for change in the mito healthcare space and for her daughter who has mito.
Cheryl has taken the initiative in gathering a large group of participants for The Bloody Long Walk each year, generating thousands of dollars to support Mito Foundation.
Trent and Alysha held a fundraiser at their Crossfit gym. They called it the Bloody Long WOD, having registrants complete a 7-hour workout and upping the ante on the 35km Bloody Long Walk for their extremely fit members.
Trent and Alysha's son, Bodhi, has mito, and this event was a way to engage their already supportive community in something they love while raising money to support Mito Foundation. The event in August raised over $9,200. All this was done while caring for their newborn baby and tending to complications with Bodhi's health.
This couple, their family and community are an inspiration.
Shelley continually devotes her time to many areas within the foundation to enrich the lives of others within the mito community.
From innovative topics for the Wellbeing Mito Connect Calls she hosts, dedication as a Mito Meet-up Lead to recently, her time and effort when assisting in developing the Peer Support Network mentor information.
Shelley’s knowledge is invaluable, and her support across so many activities demonstrates her commitment to helping others and her selfless personality. Shelley is a role model within the mito community and is highly respected.
Thank you, Shelley, for all your time and effort; it doesn’t go unnoticed.
Preeti continues to be a passionate changemaker in the mito community. She is always willing to contribute her expertise as a health professional, an ethical thinker and, most generously, as Ziya's Mum. She sees opportunities to drive change in all parts of Australia and makes connections between Mito Foundation and others working to make a difference.
This year, her work on paediatric palliative care and the new Western Australian children's hospice has been particularly noticed. Preeti continues to provide peer support with kindness and compassion, particularly for parents of children with life-limiting forms of mito, and a Mito Meet-up Lead for the parents' group.
Dane went outside his comfort zone and courageously shared his mito story to support Mito Foundation's 2022 Tax Appeal.
Dane's story was shared in a way that both encouraged supporters to fund a groundbreaking research project while also providing a positive example to inspire others in the mito community.
Kerrie supports The Bloody Long Walk in Victoria year after year with her ''Little Olive Cafe" coffee van donating the proceeds to Mito Foundation.
Kerrie also walks in the event and always fundraises in addition to the coffee van donations. Kerrie's dedication is inspired by her beautiful granddaughter Maeve.
Kay is an encouraging presence at the Mito Meet-ups who rallies the community with her positivity. Members of her Mito Meet-up have said they look forward to seeing her each month and the group wouldn't be the same without her!
She readily shares her journey and experiences whilst taking time to listen to others.
Matthew is an invaluable member of the community, who hosts a Mito Meet-up. In these spaces, he shares his knowledge of mito and uses his experiences to form a connection with others.
Matthew is a great contributor to mito events and spreads awareness wherever possible.
Kim is the Deputy Chair of the Mito Community Advisory Panel and enthusiastically volunteers her time and expertise. Kim is full of great ideas and is a regular feature at Queensland events, including the Bloody Long Walk, always with a smile and happy to chat. Her enthusiasm is infectious!
Fiona has been connected to Mito Foundation in a volunteer capacity for many years and in many roles.
Fiona is a current Mito Foundation Board member, Chair of the Mito Community Advisory Panel and the Strategic Alignment Review Panel, and recently was a Risk Management Committee member.
In each of these roles, Fiona demonstrates an unwavering commitment to the best possible outcomes for the mito community. She leads with her heart and always contributes valuable ideas about how things can improve.
Lani has been involved with Mito Foundation since she was young, walking in The Bloody Long Walk in 2017 and volunteering at events since. In 2021 Lani joined the Mito Community Advisory Panel and recently became a Mito Meet-up Lead. Lani is always willing to offer her perspective and represent young adults living with mito, and is passionate about creating better connection amongst this group.
Lani is generous with her time and ideas and adds a lot of value along the way.
Dr Maher's research has uncovered the structure and function of a protein (COA7) that when mutated, is linked to neurological conditions such as ataxia and leukoencephalopathy. It was previously unknown exactly how this protein was involved in assembling complex IV in the mitochondrial respiratory chain.
Unpicking these protein assembly processes is crucial for understanding the origins of mitochondrial disease.
Dr Davis's research uses innovative genomic methods to simplify the diagnosis of mito and shorten the long and at times invasive diagnostic journey.
This is achieved by using a simple (single) blood test and analysing nuclear and mitochondrial DNA simultaneously to find the underlying cause of disease. To further improve diagnostic rates, a new bioinformatic tool was developed to identify mitochondrial DNA variants even if only present at low levels in blood. 53.7% of patients recruited into the study were subsequently diagnosed.
Highly Commended Contributions To Mitochondrial Research
Mito Foundation acknowledges the following individuals for their commitment to mito research:
-
Dr Giulia Rossetti
-
Dr Richard Lee
-
Dr Thomas Jackson
-
Dr Isabel Lopez Sanchez
-
Dr Janet Long