International Alliance of ALS/MND Associations

R.A.C.E. To Diagnose ALS/MND

A Call to Action to Refer Early Across Diverse Healthcare Settings

 

    This project was initiated and funded by My Name’5 Doddie Foundation.   

Learning Objectives

  • Recognize the early signs and symptoms of ALS/MND across diverse healthcare settings and specialties
  • Assess clinical features and initiate appropriate investigations (if warranted) without delaying referral
  • Communicate the need for an urgent onward specialist referral to those with suspected ALS/MND
  • Expedite referrals — even in the absence of complete diagnostic confirmation — and ensure referral letters clearly communicate key clinical findings to support triage

Resources

Videos

Person Living with ALS/MND Sharing His Diagnostic Journey

Mr. Craig Reyenga,

Craig Reyenga, a person living with ALS/MND, shares his challenging diagnostic journey and the difficulties he faced throughout the process.

Overcoming Therapeutic Nihilism in ALS/MND

Prof. Orla Hardiman, BSc, MB, MD, FRCPI, FTCD, MRIA

Prof. Hardiman addresses the misconception that ALS/MND referrals are futile, stressing that multidisciplinary clinics significantly improve quality of life, offer access to research and emerging therapies, and provide meaningful hope for patients.

The Cost of Delayed Diagnosis: Personal Stories from the Faculty

Members of the faculty present cases they have encountered that highlight the real-world impact of diagnostic delays in ALS/MND.

Prof. Orla Hardiman, BSc, MB, MD, FRCPI, FTCD, MRIA

Ms. Marla Calder, BScOT

Prof. Christopher J. McDermott, PhD, MD, FRCP

Prof. Nortina Shahrizaila, DM, PhD, FRCP 

RECAP: When to Suspect ALS/MND and Refer

Prof. Nortina Shahrizaila, DM, PhD, FRCP

Prof. Shahrizaila summarizes key red flags for ALS/MND, such a progressive, painless loss of motor function or unexplained weight loss with breathing difficulty, and emphasizes the need for immediate referral when symptoms do not fit typical patterns.

Avoid Diagnostic Pitfalls: Prioritize Urgent Referrals

Prof. Orla Hardiman, BSc, MB, MD, FRCPI, FTCD, MRIA

Prof. Hardiman advises non-specialists to refer suspected ALS/MND cases promptly rather than ordering exhaustive tests, noting that early referral prevents delays, reduces unnecessary costs, and ensures patients access specialized evaluation.

Craig’s MRI Maze: A Journey Through Missed Opportunities and Delayed Referral

Mr. Craig Reyenga

Craig Reyenga reflects on his prolonged diagnostic process and how delays left him uncertain about how to live his life and plan for the future, wishing he had been referred to a specialist sooner.

Faculty Perspective: Frustration with Referral Delays

Prof. Christopher J. McDermott, PhD, MD, FRCP

Prof. McDermott discusses the frustration of receiving late referrals for ALS/MND patients, emphasizing how waiting for diagnostic certainty delays care, support, and access to clinical trials. He urges clinicians to refer early if ALS/MND is even a possibility.

From Diagnostic Uncertainty to Clarity: Insights from the Voices of People Living with ALS/MND

Two people living with ALS/MND share their journey, describing the impact of not having a diagnosis and how they felt once it was confirmed.

Ms. Leanne Sklavenitis

Mr. Bruce Virgo

What If the Patient Asks: “Could this be ALS/MND?”

Ms. Marla Calder, BScOT

Marla Calder explains how allied health professionals should respond when patients raise concerns about serious conditions—by being honest, supportive, and ensuring prompt referral and clear documentation rather than attempting to diagnose.

 

For additional information or enquiries on booking the faculty, please email education@als-mnd.org.