Chris Ross MND Research Grant funds groundbreaking nutrition toolkit for families
When someone is diagnosed with motor neurone disease (MND), everything changes. One of the most devastating symptoms for many is difficulty, eating, drinking and swallowing. These basic, everyday functions, that many of us take for granted become major challenges for those living with MND and their families.
Now, a new project is aiming to change that.
Led by Dr Alison Yaxley and Elizabeth Kapur at Flinders University and Flinders Medical Centre, MND Ed: The development and evaluation of a toolkit for patients and families to support their nutrition, hydration, and swallowing will deliver a practical, web-based toolkit to help people with MND and their families manage these critical issues across every stage of the disease.
The inaugural recipient of the Chris Ross MND Research Grant, this project has one clear goal, to empower people with MND and those who care for them with reliable, accessible and tailored information when they need it most.
“Our key goals are to improve patients’ knowledge, increase their confidence in managing these challenges, and help them make informed decisions regarding their nutrition and swallowing earlier in their journey,” said Alison.
More than a website. A lifeline.
There are existing resources that talk about nutrition in MND. But few take into consideration the person living with MND, their lifestyle and personal choices.
“While people living with MND and their families can access information on nutrition, hydration and swallowing, our toolkit will be not only evidence-based, practical and patient-centred, but developed in collaboration with people living with MND and their carers,” said Liz. “This approach aims to empower patients and carers, reduce avoidable suffering and support people to live as well as possible for as long as possible.”
The platform will be a central information hub of evidence-based nutrition and swallowing resources which embraces a proactive approach to empower patients to manage their symptoms throughout their MND journey.
Honouring Chris and continuing his mission
For the Ross family, this project holds special significance. It is the first recipient of the Chris Ross MND Research Grant. Created in memory of Chris Ross, a passionate MND advocate, the Grant recognises Chris’ contribution to the MND community through his Beat the Beast and Run4Rossy campaigns.
Chris was diagnosed with bulbar onset MND in 2021 at the age of 31. Wanting to make a difference, he shared his experience to help raise awareness, educate others and build connections in the MND community across Australia and around the world. He also worked to raise funds to support vital MND research.
The Ross family lost Chris to MND in August 2023. For his friends and family, the journey to beat the Beast isn’t over. Chris left them with an important legacy.
“Honouring Chris keeps us focused and determined,” said his mother, Karen Ross. “He gave everything he had while he was with us, and now, it is our responsibility to continue his mission.”
That mission lives on through Run4Rossy, the grassroots community movement initially launched by Chris and his two friends Josh and Josh. Now in its fifth year, Run4Rossy has become a fixture in the FightMND community, raising hundreds of thousands of dollars toward its goal of $1 million for MND research.
“We remember Chris each and every day. Hearing and seeing his name spoken with respect within the MND community, associated with fundraising, awareness, and the pursuit of a cure, fills us with immense pride. Chris would be very humbled and incredibly proud to have this research grant named in his honour.”
Why this project?
Taking an active part in selecting the recipient of the Chris Ross MND Research Grant, the Ross family were immediately struck by how closely the project aligned with Chris’s experience.
“This project stood out to us as it was particularly relevant to Chris very early on in his MND journey,” Karen said. “Being diagnosed with bulbar onset MND, Chris’s speech and swallowing were his first symptoms, and further to that, his nutrition became critically important.”
As a physiotherapist and active sportsperson, Chris always followed a nutrient-rich diet. He wanted to maintain that as much as possible during his illness. But as his condition progressed, the family had to research and adapt everything on their own.
“We had to navigate this ourselves to achieve the best possible diet for Chris, then adapt it as his condition progressed,” Karen said. “Having a tool available to guide others on this journey would undoubtedly make Chris very proud.”
“His aim with Beat the Beast and Run4Rossy was to help others, even if it was just one person at a time. Chris would love this project and the positive impact it will have on those living with MND and their families.”
A tool that offers real choices
Importantly, MND Ed is designed not as a prescriptive plan, but as a flexible resource tailored to each person’s journey. This means offering a range of diet and nutrition options that respect personal preferences and clinical needs.
“Our hope is for Liz and Alison to develop not only an online tool to guide and assist people with their nutrition, but also to support and educate about the various options available,” said Karen. “We want to reassure those affected that it is not a one-size-fits-all approach to their diet and nutrition. They still have choices.”
Karen believes that having these tools in place will make a world of difference to families like hers.
“When someone is diagnosed with MND, it is life-shattering and overwhelming. There is so much to take on and try to absorb. If this new tool can offer some assistance and provide a range of options, then it’s one less challenge for them to navigate whilst trying to live with this awful condition.”
Powered by people. Made possible by support.
The MND Ed project has been made possible through the generous support of the FightMND Care Grant Program and the passionate commitment of Australians determined to end MND, especially the Ross family and the Run4Rossy Committee, whose ongoing efforts fuel progress and hope.
“There is currently no equivalent resource in Australia. The development of this resource would not be possible without the support of this grant,” said Dr Yaxley.
“Research has shown that maintaining good nutrition and preventing weight loss is important for patients with MND in terms of quality of life and survival. This funding from FightMND will help educate and empower patients and their families by providing practical, easy and readily available information.”
And for the Ross family, it’s a deeply meaningful extension of Chris’s legacy.
“Care grants such as these are essential to help support patients and their families, as there is very poor funding of services to support nutrition in MND,” said Karen. “Without this funding from FightMND we would be unable to develop these essential nutrition and swallowing tools.”
Continue Chris’ legacy at run4rossy vol.5
The Chris Ross MND Research Grant is only possible thanks to the extraordinary efforts of the Run4Rossy community. The family, friends and supporters who continue to honour Chris and his legacy.
Now entering its fifth year, Run4Rossy Vol 5 is your chance to be part of something powerful. Every dollar raised goes directly towards groundbreaking MND research projects, like the MND Ed toolkit, that are improving lives today and fuelling hope for tomorrow.
Whether you’re running, walking, or simply showing up in support, your participation makes a difference.
The Run4Rossy Committee is aiming to reach a $1 million fundraising milestone. A testament to Chris’s spirit, the strength of his community and the belief that no one should face MND alone.
Registrations for Run4Rossy Vol 5 are now open. Join the movement, honour Chris’s legacy, and help us continue the fight against the Beast.