The purpose of the Advocacy and Public Policy Advisory Council (APPAC) is to provide advice on matters of advocacy and public policy at the global level. In addition, where possible the APPAC will provide global support to local issues where it would be impactful to advancing legislation or policy.
Chair of the APPAC
David Ali
Council Members
Kielan Arblaster
Kielan Arblaster is the Policy Manager at the MND Association in London, England.
Tanya Curry
Tanya is the CEO of MND Association. She is a highly experienced voluntary sector leader, with a background in healthcare. Tanya began her career as a registered nurse, and then became a specialist in palliative care.
She has more than 20 years of voluntary sector experience, and has held a variety of clinical leadership roles, with over 12 years as a CEO. After nearly a decade as the chief executive officer of an independent hospice, Tanya went on to utilise her extensive skills and knowledge in charity leadership roles on an interim basis. Over the last five years she has worked for a number of charities including Sue Ryder, Teenage Cancer Trust, The Ramblers and most recently at Impetus.
Tanya is a non-executive member of the NHS Suffolk and North East Essex Integrated Care Board, where she also chairs the People and Remuneration Committee. She has extensive trustee experience, giving her a vital understanding of the importance of charity governance and the roles all of our teams play in delivering fantastic care and services for the community.
Dr. Nguyen Tran Minh Duc
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.”
Dr. Christian Lunetta
Dr. Christian Lunetta is a Neurologist with experience in Amyotrophic Lateral Sclerosis (ALS) and Neuromuscular diseases (NMD) from a clinical, genetic and biochemical science point of view. Since April 2022 he is the head of the ALS Unit in IRCCS ICS Maugeri of Milano where he is involved in the coordination of care pathways and clinical research activities on ALS patients and also in the development of clinical studies. From January 2020 to April 2022, he was the Scientific Director of NEMO Lab S.r.l., an innovation technology hub involved in different fields including biorobotics, virtual reality, motion analysis and IoT solutions. From July 2019 to May 2022 he was Scientific Director and Principal Investigator of the Italian ALS Registry (ITALS Registry). Since 2017 he is a member of ALS Natural History Consortium, coordinated by the Neurological Clinical Research Institute at Massachusetts General Hospital, Boston, USA. From January 2008 to March 2022 he worked as head of ALS Care and research Area in NEMO Clinical Center of Milan, Fondazione Serena Onlus. He is member of TRICALS and attended the TRICALS Masterclass meetings. Since 2011 he worked as Principal Investigator in several clinical trials in ALS patients. He coordinated national and international projects focused on ALS.
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.
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 previously on the Board of Directors for the International Alliance from 2006- 2008 becoming Chairman of the Alliance from 2008-2012. He also won the prestigious Humanitarian Award in 2012, for his services to the cause. Gudjon was voted back onto the Board by the members in 2018. His hope is to get the PALS voice into every Association working with the Alliance. “Nothing about us, without us.”
Sabine Turgeman
Sabine Turgeman became CEO of ARSLA, the ALS/MND Association in France, in March 2021. Her team works on three missions: defending the rights of people living with ALS/MND and their caregivers in dealing with public authorities, helping and supporting people living with ALS/MND in their personal fight against the disease, and funding research. The Association’s aim is to enhance the quality of life of people living with ALS/MND, improve access to treatment and find a cure.
Sabine joined the Board of Directors of the International Alliance of ALS/MND Associations in June 2022.
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
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.
Board Liaison
Tammy Moore
Tammy Moore first came to know ALS/MND when her family member was diagnosed in 2008 and over the next 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 through advancing research, care, advocacy and information.
Tammy has served on Boards and Advisory Councils internationally, nationally and regionally – International Alliance of ALS/MND Associations Board Member; Advocacy & Public Policy Committee; Innovation & Technology Advisory Council; Strategic Planning Working Group. Health Charities Coalition of Canada Chair, Board of Directors; Compliance, Accountability, Transparency & Ethics Working Group. Ashiana Holdings, Palliative Care Matters, BC Cancer Agency – Southern Interior, Women’s Enterprise Centre of BC, and local arts, sports and service organizations.