Chair of the Board of Directors
Calaneet Balas
Calaneet Balas became CEO and President of The ALS Association in December 2017. She joined the organization in June 2016 as the Executive Vice President of Strategy, leading all three mission areas, including global research, public policy and care services, which work in an integrated fashion to find a cure, advance treatments and enhance the quality of life for people living with ALS. Calaneet joined the Board of Directors of the International Alliance of ALS/MND Associations in December 2017. Calaneet was elected Chair in December 2018.
Honorary Treasurer & Vice Chair
David Ali
David is passionate about helping to make a difference for people living with ALS/MND, having volunteered for the past 20-years on ALS/MND-related boards and in other ways at the local State, national and global levels. As the CEO of MND Australia since March 2021, David is more focussed on contributing at an operational level to improve the impact for people across Australia affected by MND today and in the future. David has a background in social policy and corporate services through a range of executive roles across the public sector, Parliament (the legislature), as a management consultant, and in the not-for-profit sector. He also brings much experience as an executive and non-executive director on government and not-for-profit boards. David says it is a real privilege to be part of the talented Board of the International Alliance since December 2017.
Directors
Gudjon Sigurdsson
Gudjon 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”.
Evy Reviers
Evy Reviers is the daughter of a pALS which is her motivation to be an ALS patient representative at the National and International level. Since 2007, she is CEO of ALS Liga Belgium, focusing on stimulating and financing scientific research on ALS, contact with ALS researchers, collaborations with university hospitals and defending the rights of pALS at governmental institutions and agencies.
She is particularly involved in regulatory aspects of ALS clinical trials and its guidelines, advocating the same rights for access to trials and future medicines for all pALS worldwide. She graduated at the EURORDIS ExPRESS Summer School 2016 and is a patient representative in scientific advice procedures (CHMP committee) at the European Medicines Agency (EMA). Also, she is member of the European Patient Advocacy Group (ePAGs) for the Rare Neuromuscular ERN Groupings of EURORDIS, being active in the Patient Advisory Board of these ePAGs.
Furthermore, she is Chairwoman of the European Organization for Professionals and Patients with ALS (EUpALS), a member of the Board of Project MinE and member of the ALS Dream Team.
Evy previously served as a member of the Board of Directors of the International Alliance during 2 consecutive terms between 2010-2016. She was re-elected to begin a new term in December 2017.
Nick Goldup
Nick joined the MND Association of England, Wales and Northern Ireland as Director of Care Improvement in August 2017 and joined the Board of the International Alliance in December 2018. Prior to this he spent 6 years as Director of Partnerships at the children’s charity Whizz-Kidz working alongside senior health commissioners and stakeholders to implement improvements to care and streamline procurement activities. Nick is a member of the UK National Wheelchair Alliance aiming to improve provision of wheelchairs for people living with MND and has worked as a Non-Exec Director of a wound and Lymphedema service for 5 years. Nick has also served as a national advisor for a selection of UK National Health Service and Department of Health improvement programmes.
Prior to his roles in the charity sector, Nick enjoyed a successful corporate career working in a variety of blue chip procurement roles over a 15 year period, including Tesco, AMEC, Mitsubishi Electric Europe and for three years as a buyer based in Jakarta, Indonesia.
During his spare time Nick is a keen cyclist and runner having run the London Marathon twice, completed 7 triathlons and numerous cycling events including Land’s End to John O’Groats, 5 UK capitals in 12 days and London to Paris all of which combined raised £½ million for charity.
Nick says ‘ I am honoured to represent the MND Association as a member of the International Alliance and look forward to working with my International colleagues to support and improve outcomes for people living with MND/ALS’.
Pablo Aquino
Pablo Aquino is a Certified English/Spanish Translator, Journalist, and the Secretary of the ALS Association of Argentina (Asociacion ELA Argentina), first and only charity exclusively focused on ALS in the country. He was one of the Association’s co-founders in November 2011, and has been assisting in the management of projects along with President Dario Ryba and the rest of the board, and developing the international relations of this institution since then. He was the coordinator and personal interpreter of international visits in Argentina, such as Drs. Lucie Bruijn, Jonathan Glass, Ammar Al-Chalabi, Hiide Yoshino and Angela Genge. Pablo has been the speaker for Asociacion ELA Argentina in every Annual Meeting of the International Alliance of ALS/MND Associations since 2013, and also participated in the constitution of UNELA, the Latin American Union of ALS/MND Associations.
His older and only brother, Alejandro, died of ALS in April 2017.
Marcela Santos
Marcela 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.
ALS Association of Colombia (ACELA)
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.”
Hilmi Uysal
Hilmi was born on April 21, 1957 in Çorum. Due to his father’s profession, primary school, secondary school and high school education took place in cities in different regions of Turkey. He completed his medical undergraduate education at Hacettepe University in Ankara and started his career as a doctor in 1982. Hilmi did his compulsory service in the province of Siirt in the southeast of the country and worked there for 3 years. He did his military service in Thrace, in the west of the country, and then started his specialization training in Ankara for his neurology specialization. He became a neurologist in 1991 and worked as a chief assistant at the Neurology Clinic of the Ankara Ministry of Health Hospital. He earned the title of associate professor in 1995. Hilmi worked in Ankara, the capital of the country, and Adana, in the south of the country, at Çukurova University. After working as an observer at the Institute of Neurological Sciences Prince of Wales Hospital in Sydney for 6 months in 1998, he started to work first at Ankarara Physical Therapy and Rehabilitation Center and then at Akdeniz University Faculty of Medicine Neurology Department in 2005. He has been working as a professor in the same clinic since 2007. Hilmi is married and has a daughter, son and two grandchildren. His hobbies include photography, cycling and popular science reading and poetry. He loves to travel.
As a clinical neurophysiology specialist at Akdeniz University Hospital, Hilmi has been doing neuromuscular diseases outpatient clinic and follow-up for 15 years. He mainly deals with ALS/MND patients and the relationship between respiratory and swallowing dysfunction of the disease is one of his first researches. He calculated the frequency of ALS in the Antalya region after approximately 5 years of follow-up, and this study is one of the rare ALS epidemiological studies in his country. He takes part in basic science studies at his university to understand the disease mechanisms of ALS MND. Currently, he is the director of a neurology specialization thesis, which is a large-scale study investigating the electrophysiological characteristics of patients with ALS. 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 is mostly made with the reference of his laboratory.
Yohei Yamada
Yohei was b
orn on July 5th, 1977, in Hokkaido, Japan. Yohei’s parents were teachers, so he moved around Hokkaido with his family. In 1993, Yohei attended high school in Idaho, USA. In 1998, Yohei attended Idaho State University, where he received his bachelor’s degree in psychology. Yohei returned to Japan in 2003 and worked for a company that imported bovine genetics, primarily from North America. Yohei was a translator, negotiator, analyst, and business consultant who travelled around the globe for the dairy industry.
Symptoms of ALS/MND appeared, around the summer of 2013. Yohei was diagnosed with ALS/MND in October 2014, a week after his youngest daughter was born. He announced the diagnosis of ALS/MND to his friends on Facebook New Year’s Eve of 2014.
A Japanese dairy farmer started the Ice Bucket Challenge to raise awareness of ALS/MND for Yohei on the New Year of 2015. This movement spread throughout the dairy industry worldwide.
Yohei retired from the dairy industry in February 2016 and had a tracheotomy in July 2016.
In August 2018, an American company and the worldwide leader in Bovine Genetics called, American Breeders Service (ABS) Global named a bull after Yohei and has donated every unit sold to ALS/MND researchers. The holstein bull, YOHEI, ranked as the #1 bull in Canada in April 2023.
In May 2019, Yohei established a company to send specially trained caregivers to ALS/MND fighters. Yohei was appointed as a Director of Japan ALS Association in April 2022, joined the Board of Directors of the International Alliance of ALS/MND Associations in November 2022, and a Branch Manager of Japan ALS Association Hokkaido Branch in June 2023.
Yohei lives with his wife and three children (two girls and one boy).