The Advocacy and Public Policy Forum (APPF) provides strategic advice on advocacy and public policy issues that affect people living with ALS/MND around the world.
Forum members share expertise and lived experience to strengthen the Alliance’s global advocacy efforts and, where appropriate, support member associations in advancing legislation, policy, and systems change within their own countries.
Chair of the APPF
Gudjon Sigurdsson
Iceland
Gudjon Sigurdsson has been a member of MND Iceland since his diagnosis of ALS/MND in 2004. He became Chairman of the Association in 2005 and continues to serve in that role. He served on the Board of the International Alliance of ALS/MND Associations from 2006 to 2008, was Chair from 2008 to 2012, and returned as a Board member from 2018 to 2024. In 2012, he received the Alliance Humanitarian Award for his outstanding service. His hope is to ensure the voice of people living with ALS/MND is represented in every member association: “Nothing about us, without us.”
Forum Members
Lung Kuo
Taiwan
Lung Kuo cared for his father throughout his journey with ALS/MND. After his father passed away in 2015, Lung joined the Taiwan MND Association, where he has served as a director, executive director, and member of several committees.
Lung holds a Master of Fine Arts degree from National Taiwan University of Arts. He is also a researcher and lecturer specializing in interaction design and human-computer interfaces. His work focuses on developing assistive technologies for people living with ALS/MND through an empathy-based approach. His research has helped patients and international caregivers overcome language barriers in Taiwan.
“I might be the next PALS in the future because of genetics, so I will do my best to prepare for that day. Also, based on empathy, I want to help patients and families prepare for and face the challenge.”
Melanie Lendnal, Esq.
Melanie Lendnal is Senior Vice President of Policy & Advocacy at The ALS Association, where she leads the organization’s public policy efforts to make ALS a livable disease while working toward a cure. Before joining The ALS Association, she built and led the state government affairs team at the American Kidney Fund.
Throughout her career, Melanie has led national advocacy campaigns addressing issues including hate groups, hunger, homelessness, human trafficking, and animal cruelty. Her leadership has contributed to the passage of dozens of federal laws and regulations, hundreds of state laws and local ordinances, and numerous executive orders.
She began her career as a journalist with Meet the Press and Dateline NBC before becoming an Emmy Award-winning reporter and anchor. Melanie is a licensed attorney in Maryland and holds a law degree from the University of the District of Columbia David A. Clarke School of Law and a Bachelor of Arts in Political Science from Tufts University. She lives in Maryland with her husband and two daughters.
Evy Reviers
Evy Reviers is CEO and Chairwoman of ALS Liga Belgium and founder and Chair of EUpALS, the European Organisation for Professionals and People with ALS. EUpALS brings together 28 ALS associations across 22 European countries to advocate for equitable access to ALS clinical trials and future therapies.
At the European level, Evy is a patient representative at the European Medicines Agency (EMA), a member of the EURORDIS Drug Information, Transparency and Access Task Force, and participates in the ERN EURO-NMD Patient Advocacy Group. She also serves on the Executive Boards of TRICALS and Project MinE and contributes to the European Academy of Neurology ALS guideline working group.
Internationally, she has served several terms on the Board of Directors of the International Alliance of ALS/MND Associations.
Marcela Santos
Colombia
Marcela Santos is a psychologist with a Master’s degree in Social Inclusion of People with Disabilities. Her father lived with ALS/MND for 16 years, and she was one of his primary caregivers. His positive outlook on ALS/MND continues to inspire her work. He passed away on February 8, 2020.
Marcela has dedicated her academic and professional career to supporting people with disabilities in Colombia through public institutions, private organizations, and NGOs. Since 2014, she has volunteered as a psychologist, providing free psychotherapy to people living with ALS/MND and their caregivers. Her personal experience, combined with her professional expertise, allows her to provide compassionate and meaningful support.
Nguyen Tran Minh Duc, MD
Dr. Nguyen Tran Minh Duc is a physician dedicated to improving patient care and advancing medical research. He received his medical degree from the University of Medicine and Pharmacy at Ho Chi Minh City, Vietnam, and has since made significant contributions through research, education, and leadership.
Since 2016, Dr. Duc has served as a research team leader at the Online Research Club, where he has focused on developing clinical practice guidelines and conducting translational research to bridge the gap between basic science and clinical care. He is also committed to medical education and has helped raise awareness of ALS/MND in Vietnam through a variety of initiatives.
His work has resulted in numerous international publications that have been cited more than 300 times, reflecting the impact of his research and his commitment to improving patient outcomes.
Ilayda Ulgenalp
Ilayda Ulgenalp is Specialist, Advocacy and Stakeholder Relations at ALS Canada. In this role, she works with the ALS community to build champions across government, industry, and the broader stakeholder ecosystem to advance public policy priorities that affect people living with ALS.
Ilayda holds a Bachelor of Applied Science from McMaster University and is pursuing a postgraduate diploma in Pharmaceutical Regulatory Affairs, with a focus on pharmacoeconomics, drug reimbursement pathways, and international regulatory systems.
After losing a loved one to ALS in 2022, Ilayda became even more committed to advocating for meaningful change for people affected by ALS/MND.
Hilmi Uysal, MD
Hilmi Uysal was born in Çorum, Türkiye, and completed his medical education at Hacettepe University in Ankara. He began practising medicine in 1982, became a neurologist in 1991, joined Akdeniz University Faculty of Medicine in 2005, and was appointed Professor of Neurology in 2007.
As a clinical neurophysiology specialist at Akdeniz University Hospital, Hilmi has led the neuromuscular diseases outpatient clinic for more than 15 years. He currently supervises a large-scale study examining the electrophysiological characteristics of people living with ALS/MND. His research interests include spasticity, spinal reflex mechanisms, axonal excitability, and motor unit estimation in neurological diseases. His laboratory is the regional referral centre for electrophysiological diagnosis of ALS/MND.
Hilmi is married with a daughter, a son, and two grandchildren. His interests include photography, cycling, popular science, and poetry.
Alex Watson
Alex Watson is committed to improving outcomes for people affected by MND through policy-driven change. As Policy Manager at the MND Association in the United Kingdom since 2025, Alex works to influence public policy that improves support, care, and quality of life for people living with MND.
Before joining the MND Association, Alex worked as a civil servant in the UK Department of Health and Social Care, where he developed expertise in government health policy, decision-making processes, and implementing change within complex systems. He brings practical experience in translating policy ambitions into meaningful improvements for patients and families.
Yohei Yamada
Yohei Yamada was born in Hokkaido, Japan. After completing high school in Idaho, USA, he earned a bachelor’s degree in psychology from Idaho State University. Returning to Japan in 2003, he built a career in the global dairy genetics industry as a translator, negotiator, analyst, and business consultant.
Yohei developed symptoms of ALS/MND in 2013 and was diagnosed in October 2014, one week after the birth of his youngest daughter. Following his diagnosis, a Japanese dairy farmer launched the Ice Bucket Challenge in his honour, helping spread awareness throughout the global dairy industry.
After retiring from the dairy industry in 2016, Yohei underwent a tracheotomy and later founded a company that provides specially trained caregivers to people living with ALS/MND. He became a Director of the Japan ALS Association in 2022, joined the Board of Directors of the International Alliance of ALS/MND Associations later that year, and became Branch Manager of the Hokkaido Branch in 2023.
Yohei lives with his wife and three children.
Staff Liaison
David Ali
Director, Advocacy and Membership, International Alliance of ALS/MND Associations
David Ali has spent more than 20 years volunteering and working with ALS/MND organizations at the local, national, and international levels. Since becoming Chief Executive Officer of MND Australia in 2021, he has focused on improving outcomes for people affected by MND today while helping shape a better future.
David has a background in social policy, corporate services, public administration, parliamentary affairs, management consulting, and the not-for-profit sector. He also brings extensive experience as both an executive and non-executive director on government and charitable boards. He has served on the Board of the International Alliance of ALS/MND Associations since 2017.