The My Name’5 Doddie Foundation has launched RACE to Diagnose, the first UK program providing dentists, GPs, and other healthcare professionals training to recognize early signs of motor neurone disease (MND) to expedite specialist referrals and improve patient outcomes.
Motor neurone disease is notoriously difficult to identify in its initial stages. Because there is no single test that tells you conclusively that someone has it
, patients often drift through various sectors of the healthcare system before they ever encounter the right specialist, according to Jessica Lee, director of research at the My Name’5 Doddie Foundation.
RACE to Diagnose: Targeting Hidden Early Indicators
The initiative focuses on clinicians who are likely to see patients early in the disease’s progression. By training dentists and general practitioners, the foundation aims to catch subtle physical changes that might otherwise be overlooked. Early indicators of the life-shortening condition include unexplained muscle wasting, progressive muscle weakness, and changes affecting swallowing, speech, or the tongue.
Dentists, in particular, are positioned to spot specific oral markers. According to reporting from the Daily Mail, these can include involuntary muscle twitches under the tongue when it is relaxed, or a patient’s difficulty moving the tongue in and out of the mouth. Speech changes may also be apparent, such as slurring or difficulty pronouncing sounds that require precise tongue movement.
The program does not stop at identification. It provides practical guidance on how to assess these symptoms and, crucially, how to explain an urgent referral to a neurologist without causing unnecessary alarm. It also specifies the clinical details specialists need to prioritize the patient effectively.
“RACE to diagnose gives professionals practical guidance on what to look for, how to assess what they are seeing and when to make an urgent referral.”
Jessica Lee, director of research at the My Name’5 Doddie Foundation
The Critical Window for Treatment and Life Planning
Speeding up the diagnostic timeline is not merely a clinical goal; it is a quality-of-life necessity. While some emerging treatments may be more effective if administered early in the disease course, the benefits of a prompt diagnosis extend to the home.
Early detection allows families more time to arrange disability adaptations and home modifications before a patient becomes severely unwell. This “window” of time is often narrow. Andy Vaughton, a former NHS consultant anaesthetist diagnosed with MND in 2021, noted that delays in diagnosis can postpone vital life decisions and deprive patients of necessary care.
Andy Vaughton said that he knew he had a limited window of able-bodied life left when he could still do the things he wanted to do, adding that he travelled, did the sports he loved, and spent precious time with his wife and boys. Andy Vaughton, former NHS consultant anaesthetist
MND Pathology and Risk Factors
The disease is characterized by damage to the nerves in the spinal cord and brain that regulate breathing, swallowing, speech, and movement. As these nerves fail, muscles waste away, eventually leading to paralysis and death. In the UK, approximately 2,200 people are diagnosed annually, with most cases detected only after symptoms have become debilitating.
The stakes of this diagnostic gap are high.
The Legacy of Doddie Weir
The training program is the latest effort from the foundation established by Doddie Weir, the former Scotland rugby international. Weir died in November 2022 after a six-year battle with the disease.
By integrating MND screening into routine healthcare visits—such as a dental check-up or a GP appointment—the foundation is attempting to bridge the gap between the first subtle symptom and the first specialist appointment. This shift in the diagnostic pathway is intended to give patients the best possible chance of accessing clinical trials or available treatments before the disease progresses to a debilitating stage.
“As treatments begin to emerge, reaching people earlier in the course of the disease may be critical to giving treatments the best possible chance of having an effect.”
Jessica Lee, director of research at the My Name’5 Doddie Foundation
By streamlining the process from initial detection to specialist care, the foundation aims to ensure that patients receive timely interventions during the most effective window for treatment.