The purpose of the Advocacy and Public Policy Forum is to provide advice on matters of advocacy and public policy at the global level. In addition, where possible the Advocacy and Public Policy Forum will provide global support to local issues where it would be impactful to advancing legislation or policy.
Chair of the Advocacy and Public Policy Forum
Gudjon Sigurdsson
Gudjon Sigurdsson has been a member of the MND Association of Iceland since his diagnosis of ALS/MND in 2004. He became the Chairman of the Association in 2005 until the present day. He was a member of the Board of the International Alliance from 2006- 2008, becoming Chairman of the Alliance from 2008-2012, and returning as a member from 2018-2024. He also won the prestigious Humanitarian Award in 2012 for his services to the cause. His hope is to get the PALS voice into every Association working with the Alliance. “Nothing about us, without us.”
Forum Members
Kielan Arblaster
Kielan Arblaster is the Policy Manager at the MND Association in London, England.
Nguyen Tran Minh Duc, MD
Dr. Nguyen Tran Minh Duc is a highly qualified and experienced medical doctor who has dedicated his career to improving patient care and advancing the field of medicine. He received his medical degree from the University of Medicine and Pharmacy at Ho Chi Minh City, Vietnam, and has since gone on to make significant contributions to the medical community through his research and leadership.
Since 2016, Dr. Duc has served as a research team leader at the Online Research Club, where he has focused on developing checklists and guidelines for clinical practice, as well as conducting translational research to bridge the gap between basic science and clinical applications. In addition to his work in research, Dr. Duc has a strong interest in medical education and has made efforts to promote awareness of ALS in Vietnam through various campaigns and initiatives.
Dr. Duc’s dedication to research and excellence has been further demonstrated through his numerous international publications, which have been cited over 300 times and have contributed to an h-index of 8. These achievements reflect the impact and reach of his work, and showcase his commitment to advancing the field of medicine and improving patient outcomes.
Lung Kuo
Lung Kuo had completely experienced caring for his beloved PALS father. After his father passed away in 2015, Lung joined the Taiwan MND Association, serving on the board as director, executive director, and several committees.
Lung holds a Master of Fine Arts (MFA) degree from National Taiwan University of Arts, also Lung is a researcher and a lecture, focus on interaction design and human computer interface. Emphasizes on the basis of empathy, to develop assistive technology for ALS/MND patients. His research result helped patients and foreign 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 the empathy to help patients and families to prepare and face the challenge.”
Tammy Moore
Tammy Moore first came to know ALS/MND when a family member was diagnosed in 2008. Over the subsequent five years, she was witness to the challenges her family faced. In 2014,Tammy became the CEO of the ALS Society of Canada, a national organization with a mission to improve the lives of Canadians affected by ALS/MND through advancing research, care, advocacy and information.
Tammy has served on Boards and Advisory Councils internationally, nationally and regionally. With the Alliance specifically, she has served on the Board, Advocacy & Public Policy Forum, Innovation & Technology Advisory Council and Strategic Planning Working Group. She has also been involved with Health Charities Coalition of Canada Board, and Compliance, Accountability, Transparency & Ethics Working Group; Ashiana Holdings; Palliative Care Matters; British Columbia Cancer Agency – Southern Interior; Women’s Enterprise Centre of British Columbia; and local arts, sports and service organizations.
Evy Reviers
Evy Reviers is the CEO and Chairwoman of ALS Liga Belgium, and she founded and chairs EUpALS – the European Organization for Professionals and Patients with ALS. We unite 28 European ALS Associations from 22 European countries, defending the rights of all European patients with ALS with emphasis on advocating EU harmonization of access to ALS clinical trials and future medicines.
Also at the European level, she is a patient representative at the European Medicines Agency (EMA),
member of the EURORDIS Drug Information, Transparency and Access (DITA) Task Force, and via
EURORDIS involved in the ERN EURO-NMD Patient Advocacy Group. Furthermore, she is a member of
the Executive Board of TRICALS and of Project MinE, and a member of the Working Group on the
European Academy of Neurology (EAN) Guidelines on management of ALS.
At the global international level, she served several terms in the Board of Directors of the International
Alliance of ALS/MND Associations.
Marcela Santos
Marcela Santos is a Psychologist with Masters in Social Inclusion of People with Disabilities. Her dad lived with ALS for 16 years, and she was one of his primary caregivers. Her dad had a very positive outlook on ALS and the way he embraced it was passed to his daughter. Her father, Alfredo Santos recently passed away on February 8th 2020. She has dedicated all her academic and professional life to the care of people with disabilities in Colombia in public and private entities and NGOs. She has been a volunteer psychologist providing psychotherapy at no cost to PALS and their CALS in Colombia since 2014. Besides her academic history and professional experience, the personal experience with her dad, allows her to give a much more meaningful care to PALS & CALS.
Ilayda Ulgenalp
Ilayda Ulgenalp works for the ALS Society of Canada as Specialist, Advocacy and Stakeholder Relations. In this role, Ilayda works together with the ALS community to build champions within government, industry and the broader stakeholder ecosytem to advocate for the public policy issues that affect people living with ALS. Ilayda holds a Bachelor of Applied Sciences degree from McMaster University and is currently seeking a post-graduate diploma in Pharmaceutical Regulatory Affairs, where she is honing her expertise in pharmacoeconomics, drug reimbursement pathways and international regulatory systems.
Ilayda lost a loved one living with ALS in 2022 and is passionate about making a difference in the ALS community.
Hilmi Uysal, MD
Hilmi Uysal, born in Çorum, Turkey, pursued his education across various Turkish cities due to his father’s profession. He completed his medical undergraduate studies at Hacettepe University in Ankara, embarking on his medical career in 1982, later becoming a neurologist in 1991. He joined Akdeniz University Faculty of Medicine Neurology Department in 2005, becoming a professor in 2007.
As a clinical neurophysiology specialist at Akdeniz University Hospital, Hilmi has been doing neuromuscular diseases outpatient clinic and follow-up for 15 years. Currently, he is the director of a neurology specialization thesis, which is a large-scale study investigating the electrophysiological characteristics of patients with ALS/MND. In his main field of study, clinical neurophysiology, he researches spasticity and spinal reflex mechanisms. Hilmi continues to work on axonal excitability and estimation of motor unit number in different neurological diseases. The clinical neurophysiology laboratory he works in is the reference point of the region, and therefore, the electrophysiological diagnosis of patients with ALS/MND is mostly made with the reference of his laboratory.
Hilmi is married with a daughter, son, and two grandchildren, and his hobbies include photography, cycling, popular science reading, and poetry.