As the Chancellor of the Exchequer delivered the Budget Speech, Gary's thoughts turned to the challenges faced by those living with disabilities, particularly those battling rare conditions. He has concerns about potential funding changes and their impact on this vulnerable community.

Gary has been working with his MP, Layla Moran (Liberal Democrat), who is supportive in raising awareness about the realities of living with a rare disease.

Gary also advocates for a more active role of the research facilities at the University of Oxford and use their capacity to drive education and innovative treatments, which would offer hope for those affected by neuroacanthocytosis syndromes. Understandably progress requires patience and persistence, but he remains determined in his commitment to educating the medical community. He also believes that advancements in rare disease research in general will have positive ripple effects for a broader spectrum of disabilities.

Beyond research funding, Gary is a passionate champion for improved accessibility in transportation. He wrote about the irony of Oxford's newly redesigned train station, which, despite its expansion, may still fall short of providing adequate access for passengers who rely on level platforms. It’s quite in contrast with the accessible platforms of the TfL Crossrail. Also, purchasing a Disabled Transport Pass, allows a reduced price for the most expensive rail system in Europe, yet the only type of mobility aides permitted to enter these trains are those that are able to be dismantled and carried onto the trains. Buses and coaches also deny the ability to use their services, and the SCAS, the South Central Ambulatory Service ended all transport disabled people to and from our transport vehicles for all that require mobility apparatuses to and from their surgeries unless we are it is for renal dialysis since 1 October 2024. 

These transportation barriers create significant hardships. Attending an essential medical appointment becomes a financial challenge. Gary shared how his wheelchair batteries are less effective in colder temperatures. So, a return transit van to the Movement Disorders Centre at the John Radcliffe Hospital would cost him £100 when the weather wouldn’t permit him to use his wheelchair. The cost of transport to a specialist oral procedure at a hospital in Banbury, just 25 miles from his home, would exceed £300. Understandably not everyone has access to a personal vehicle or some readily available assistance, so the costs will just amount to a substantial amount.

Despite facing his own health challenges, Gary's is committed to advocate for these issues. In his own words: “I am aware that this is a very ambitious goal, and I may not be able to achieve these goals and aspirations. I am not going to stop until I can improve the dialogue and the empathy that addresses the potential that we have within us to make a positive impact for the future.”

Gary's story is a n inspiring proof for the power of individual action. His efforts to raise awareness and push for systemic change are an inspiration to us all. We will continue to follow Gary's journey and support his vital advocacy work.

If you have similar stories about issues in your region, please could you share them with us. We’re keen to make as many voices heard as possible and support in any way the rights to improved access to transportation for all individuals with rare diseases and disabilities.