Awards

Dr. Philip Van Damme serves as a professor at KU Leuven, Head of the Department of Neurology at University Hospital Leuven, and Director of the Neuromuscular Reference Centre. With nearly two decades of dedicated focus on ALS/MND since completing his neurology specialization in 2006, he has established himself as a global leader in both clinical care and groundbreaking research.

As Director of the Neuromuscular Reference Centre since 2013, Dr. Van Damme leads a multidisciplinary team that delivers outstanding care to ALS/MND patients. The centre’s comprehensive approach brings together neurologists, pneumologists, speech therapists, physiotherapists, nutritionists, nurses, psychologists, and social workers, exemplifying the integrated care model essential for optimal ALS/MND management.

Dr. Van Damme’s research contributions are extraordinary in both scope and impact. His neurofilament biomarker work proved pivotal when regulatory agencies FDA and EMA approved tofersen (Qalsody) for SOD1-ALS based on its ability to reduce plasma neurofilament light chain levels. This achievement represents a direct translation of his research into life-changing therapy for patients.

As a driving force behind Project MinE, Dr. Van Damme has led one of the largest genetic research initiatives in ALS/MND history, analyzing DNA from 20,000 ALS patients and 10,500 control subjects. Under his leadership, the Belgian branch became the first international partner to fully reach its financial goal and complete its scientific work packages, setting an example for global collaboration.

With more than 380 peer-reviewed publications, a Google Scholar h-index of 100, and over 37,900 total citations, Dr. Van Damme’s scientific output reflects sustained excellence. His current involvement in PRECISION-ALS, an innovative programme bringing together European academic centres and international industry partners, continues his commitment to advancing therapeutic development.

Dr. Van Damme’s global perspective extends beyond research to compassionate patient care. His friendly demeanour makes him beloved by patients, and his regular participation in ALS Liga Belgium events demonstrates his commitment to the broader ALS/MND community.

2024: Dr. Jonathan D. Glass and Dr. Zachary Simmons
2023: Dr. Jeremy M. Shefner
2022: Dr. Richard Bedlack
2021: Dr. Adriano Chiò
2020: Professor Ammar Al Chalabi
2018: Dr. Angela Genge
2017: Dr. Merit Cudkowicz
2016: Dr. Mamede de Carvalho
2015: Dr. Terry Heiman-Patterson
2014: Dr. Matthew Kiernan
2013: Dr. Leonard van den Berg
2012: Dr. Benjamin Brooks
2011: Professor Orla Hardiman
2010: Dr. Edward Kasarskis
2009: Professor Christopher Shaw
2008: Dr. Michael Strong
2007: Dame Professor Pamela Shaw
2006: Dr. Walter G. Bradley
2005: Dr. Stanley Appel
2004: Dr. Robert G. Miller
2003: Dr. Robert H. Brown
2002: Professor Vianney DeJong
2001: Dr. Lewis P. (Bud) Rowland
2000: Professor Michael Swash
1999: Dr. Andrew Eisen
1998: Dr. Hiroshi Mitsumoto
1997: Professor Nigel Leigh
1996: Dr. Donald Mulder
1995: Dr. Teepu Siddique
1994: Professor Vincent Meininger

Dr. Alper Kaya, Chairman of the ALS/MND Association Turkey and a person living with ALS/MND for over three decades, exemplifies the transformative power of turning personal experience into global impact. Since his diagnosis in 1990, he has dedicated his life to advancing the cause of people living with ALS/MND worldwide.

As a medical doctor specializing in ophthalmology before his diagnosis, Dr. Kaya has leveraged his clinical expertise and lived experience to drive systemic change. He founded the ALS Consortium of Turkey, the nation’s first comprehensive database for ALS/MND epidemiological research and encouraging patient participation in scientific studies.

Dr. Kaya’s advocacy achievements include spearheading the establishment of Turkey’s Parliamentary Research Commission for ALS, SMA, DMD, MS, and related diseases in 2019. His efforts gave people living with ALS/MND their first opportunity to address parliament directly, resulting in policy changes and the formation of the Ministry of Health Rare Diseases Commission.

His global impact extends through innovative awareness campaigns, including officially launching the Ice Bucket Challenge in Turkey in 2014. The campaign raised $400,000 and achieved significant public awareness through media engagement featuring celebrities and influencers.

During the devastating February 2023 earthquake affecting 11 Turkish cities, Dr. Kaya immediately mobilized resources to locate and support approximately 700 people living with ALS/MND in the affected region. His leadership in coordinating international relief efforts, including partnering with the Global Alliance for Disaster Resource Acceleration, demonstrates his commitment to the global ALS/MND community during crisis situations.

Dr. Kaya has pioneered the use of assistive technologies, serving as an early adopter and consultant for innovations such as the On-Screen Keyboard and EyeHarp digital music software. His world-first live musical performance using EyeHarp has inspired countless individuals with disabilities to explore artistic expression through technology.

Through his comprehensive website and daily patient consultations, Dr. Kaya continues to provide medical guidance and hope to individuals worldwide. His personal blog has received over 600,000 visitors worldwide, establishing him as a trusted resource and advocate.

2024: Evy Reviers
2023: Dr. Lucie Bruijn
2022: Sally Light
2021: Dr. David Taylor
2020: Carol Birks
2019: Dario Ryba
2018: Dr. Brian Dickie
2017: Peter Frates, Patrick Quinn and Anthony Senerchia, Jr., the founders of the Ice Bucket Challenge
2016: James Allen Heywood and Benjamin Heywood
2015: Jesus Mora
2014: Wendy Abrams
2013: Dr. Jeffrey Dietch
2012: Gudjon Sigurdsson
2011: Danny Reviers and Mia Mahy
2010: Jette Moeller
2009: Professor Kathy Mitchell
2008: Rodney Harris
2007: Tricia Holmes
2006: Mrs. Misao Hashimoto
2005: The MND Association of South Africa
2003: Dr. David Oliver
2002: Dee Holden Norris
2001: Yuko Matsuoka
2000: The MND Association of England, Wales and Northern Ireland

Alberto Fontana is the visionary founder of the NeMO Clinical Centres, a national network of excellence in Italy dedicated to comprehensive care for people with neuromuscular diseases, including ALS/MND. His revolutionary approach has fundamentally changed how care is conceived and organized, placing the person, not just the patient, at the centre of treatment.

The NeMO network represents a landmark achievement in healthcare delivery, encompassing 134 beds for intensive and subacute inpatient care, 10 rehabilitation gyms for motor and respiratory therapy, and 400 specialized professionals. The network serves over 7,500 individuals annually across eight locations throughout Italy, with all services provided through the National Health System at no cost to families.

Under Fontana’s leadership, the NeMO Centres have pioneered a model of personalized and integrated care plans, tailored to functional needs, disease stage, and family context. This approach combines high specialization with local proximity, ensuring comprehensive care that tangibly improves quality of life, promotes autonomy, and safeguards human dignity.

In 2024, the NeMO Centres participated in 72 clinical studies on neuromuscular diseases, including 24 focused on ALS/MND. Fontana’s commitment to translating research into practice has led to measurable improvements in care outcomes and positioned NeMO as a leader in evidence-based treatment.

“Alberto Fontana has trained generations of professionals, listened to families, and built bridges between medicine and everyday life,” explains Fulvia Massimelli, president of the Italian ALS Association. “He has never limited himself to ‘managing services’ — he has built a culture of care that sees fragility as truth and dignity as a right.”

Fontana’s influence extends far beyond Italy, with the NeMO model now internationally recognized as best practice for managing complex conditions marked by high vulnerability. His strategic vision blends local context with global knowledge exchange, making him a respected voice in international healthcare collaboration.

2024: Alisa Apreleva, PhD, MT-BC, NMT & Tatiana Mesquita e Silva, PT, PhD
2023: Dr. Deirdre Murray
2022: Richard Cave
2021: Dr. Melinda Kavanaugh and Sarah Solomon
2020: John Costello
2019: Rachel Marsden
2018: Dr. Sara Feldman

Apaala Basak, a doctoral student in Biological Engineering, has developed a revolutionary optogenetic therapy targeting tongue function to address dysphagia, a life-limiting ALS/MND symptom. Her innovative approach uses minimally invasive intralingual viral delivery followed by surface light stimulation to activate hypoglossal motor units and promote neuromuscular regeneration.

What makes Basak’s research particularly significant is its real-world clinical relevance. Unlike most preclinical studies that begin treatment before symptom onset, her work models post-symptom intervention, reflecting actual patient diagnosis timelines. Her research demonstrates that surface tongue stimulation can generate robust contractions without compromising breathing — a critical safety consideration for people living with ALS/MND.

Basak is also a co-inventor on a patent application for an oral retainer device that could enable non-invasive tongue stimulation in people living with ALS/MND, potentially preserving natural swallowing function and delaying feeding tube dependence.

Dr. Sadegh Ghaderi has pioneered a comprehensive neuroimaging framework that addresses the urgent need for objective biomarkers in ALS/MND diagnosis and monitoring. His PhD research integrates multiple advanced MRI techniques — including structural MRI, diffusion-based MRI, magnetic resonance spectroscopy, and functional MRI — to create an unprecedented map of brain changes in ALS/MND.

Dr. Ghaderi’s multimodal approach has identified novel biomarkers in regions beyond the traditionally studied motor cortex, providing clinicians with more sensitive tools for early diagnosis and treatment monitoring. His PhD project has generated nine peer-reviewed publications, earned him the Best Thesis Content Award from the Basic and Clinical Neuroscience Congress, and secured an oral presentation at the 36th International Symposium on ALS/MND.

The practical value of both innovations lies in their accessibility. Basak’s optogenetic approach targets peripheral intervention rather than invasive brain surgery, while Ghaderi’s neuroimaging framework builds upon standard MRI technology available in clinics worldwide.

2024: Valeria Otalora Garces, Valentina Gonzalez and Luisa Maria Hormizda Infante
2023: Gauri Desai and Zineb Flahy