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.
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.
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.
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.
Angela Harris has extensive leadership and Board experience within the third sector for over 15 years. She has worked in UK-wide health-focused charities across government, the National Health Service (NHS), and private and public sectors to deliver positive change for beneficiaries while influencing government and NHS. She was instrumental in the PACE process working with the Scottish Medicines Consortium to approve secondary breast cancer drugs in Scotland, as well as her role within the Cancer Coalition to drive government change on workforce and the introduction of a psychological therapies framework.
While in her role at Changing Faces, Angela led the commissioning project to bring national support services to Wales and established UK partnerships, including with the Association of Ambulance Chief Executives, Police Scotland and Scottish Fire Service to embed equality and diversity. Driven by positive change, Angela was also Chair of Birthlink, an Edinburgh-based adoption charity, during its strategic review to extend its work into care.
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.”
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.”
Gethin Thomas has been the Executive Director, Research at MND Australia since 2019. He oversees the research grant program and manages national and international partnerships. Gethin is also Chair of the Scientific Advisory Council of the International Alliance of ALS MND Associations which is a centralized resource to review and provide global perspective on scientific and biomedical announcements, information and research opportunities relating to ALS/MND.
Gethin has over 20 years of experience as a biomedical researcher, having published widely and secured almost $4M in research funding. He has extensive review experience across a wide range of journals as well as reviewing grants for Australian and International funding bodies. Over the last 10 years as a senior research manager, he has directed a University Research Office and served as an Associate Dean of Research. He has a deep understanding of research strategy and the research funding system from the grant preparation, application and review process through to management of funded projects at both the researcher and institutional level.
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.
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.
Yohei Yamada was born in Hokkaido, Japan, but as his parents were teachers, 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).