The PALS & CALS Advisory Council (PCAC) helps ensure the Alliance’s work reflects the perspectives, priorities, and lived experiences of people living with ALS/MND and caregivers from around the world.
Council members provide advice, feedback, and global perspective to support the Alliance’s programs, advocacy, communications, and strategic priorities.
Chair of the PCAC
Bruce Virgo
Scotland
Bruce Virgo is an international maritime lawyer of over 40 years practice in Australia, England/Wales and Scotland. Australian by birth, he now lives with his family in Scotland. Bruce was diagnosed with MND in 2014 when Head of Shipping at the London office of an English law firm. In May 2016 his condition forced him to give up a full-time role. He remains a partner, but only in a consultative role.
Since 2014 Bruce has assisted with fundraising and contributing to various research projects concerning MND, primarily through Edinburgh’s Anne Rowling Clinic, including the MND-SMART drug trial. He is active in raising awareness of MND as a patient advocate on social media as well as attending the 2018 ALS/MND Symposium as a Patient Fellow and again in 2019 as an independent advocate. He is keenly interested in both increased global collaboration of efforts to fight MND as well as attaining a unified voice for PALS & CALS. Although now unable to participate in most of his outdoor loves — surfing, diving, water polo and hill walking — he retains a supporter’s love of rugby union.
Council Members
Lienka Botha, MD, MBChB, ICF-ACC
South Africa
Dr. Lienka Botha is a South African medical doctor, certified coach (ICF-ACC), and Chairperson of the Motor Neurone Disease Association of South Africa (MNDA SA). Her commitment to the MND community is both professional and deeply personal: she lost her father to MND, and that experience continues to shape her advocacy, her leadership, and her belief that no family should navigate this disease without support.
Through MNDA SA, Lienka leads initiatives spanning patient and caregiver support, healthcare professional education, lay adviser networks, equipment loan programmes, and national advocacy. She is passionate about expanding equitable access to MND care in resource-limited settings and elevating the African voice in global MND conversations.
In her clinical practice, Lienka works in chronic pain rehabilitation at Fx Health. She also holds an NQF2 Field Guide qualification and is developing GuideWell, a professional resilience and coaching platform for African safari and field guides, reflecting her broader commitment to sustainable, purpose-driven careers in demanding environments.
She is based in the Western Cape, South Africa.
Natalie Gauld, ONZM, PhD
New Zealand
Dr. Natalie Gauld has worked in many areas as a pharmacist including early phase clinical trials and driving and implementing new initiatives in pharmacy. Her leadership in medicines access in collaboration with others includes gout prevention, hepatitis C treatment, oral contraceptives and vaccines available as pharmacist-only medicines. Research led by Natalie has informed new services in pharmacy internationally. Awards recognizing this work include Officer of the New Zealand Order of Merit for services to pharmacy and health, the Pharmaceutical Society of New Zealand’s Gold Medal, and Distinguished Alumnus award from the University of Otago’s School of Pharmacy. She has published over 40 peer reviewed papers.
Diagnosed with ALS in March 2022, Natalie started fundraising for MND in late 2022. In November 2023, she started part-time at Motor Neurone Disease New Zealand as Research Advisor and Best Practice Advocate. Natalie is leading the MND Insight Research, a landmark study funded by the Health Research Council, Motor Neurone Disease New Zealand and voluntary time. Results have been presented at conferences and the first of multiple papers was published in January 2026.
Natalie has two adult daughters and a husband. She loves the outdoors, riding nearly 5,000 km on her three-wheel electric cycle, aiding accessibility changes on trails around New Zealand. Her mobility, voice and energy are increasingly affected by ALS but she remains passionate about stimulating improvements for people with motor neurone disease.
Alper Kaya, MD
Türkiye
Dr. Alper Kaya completed his medical education at Dokuz Eylul University Faculty of Medicine in Izmir. He worked as a general practitioner in the rural areas of the country for four years. He graduated from Çukurova University Ophthalmology Clinic as an ophthalmologist. He was diagnosed with ALS at the age of 30. He was quadriplegic and discharged from the hospital with a ventilator. He served as a board member of the International Alliance of ALS/MND Associations between 2012 and 2014. As of June 1, 2022, Alper is the chairman of ALS/MND Association Türkiye.
He works in assistive technology and assistive music. He is the user and performer of the Eyeharp and Jamboxx instruments. He is a member of the nonprofit Eyeharp Project. Dr. Kaya is married to dentist Elçin and they have a daughter. He has a blog named “Living with ALS”, which he dedicated to ALS patients and their relatives.
Albert Koo Tee Yih
Malaysia
Albert Koo Tee Yih is a lawyer by profession with 28 years of standing in the areas of family, mediation, civil and commercial dispute. Before being diagnosed with ALS, Albert was an avid sportsman who enjoyed the outdoors and spent his time pursuing his love for long distance cycling, camping and mountain climbing. It was through this passion that he founded a nonprofit organization, Uniquevarcity of Hikers, which seeks to help and empower mountain communities by improving their socio-economic conditions.
Having been diagnosed in July 2018 and despite being paraplegic, he continues his legal practice whilst seeking to create awareness of the disease and causes for equal opportunity of funding and research trials for ALS patients in Malaysia and this part of the world. He seeks to obtain the support of both local and international collaboration to help push the agenda for the rights of ALS patients in Malaysia and in the region. Albert resides in Malaysia with his wife and a daughter who is currently pursuing legal studies. He believes, “We only die once, but we are living every day,” which encapsulates empowering patients to live positively and in the present moment.
Philip Kipngeno Langat
Kenya
Philip Kipngeno Langat is the Founder and Chairperson of the Motor Neuron Disease Association of Kenya (MNDAK). His advocacy is informed by lived experience. He lost two brothers and two paternal uncles to ALS/MND and witnessed his father’s long struggle with severe facial and jaw pain consistent with trigeminal neuralgia, later developing symptoms suggestive of ALS. These experiences, marked by delayed diagnosis and limited support, motivated him to establish MNDAK to promote awareness, caregiver support, and policy engagement on ALS/MND in Kenya and across the broader African context where services remain limited.
Philip engages with the global ALS/MND community through the International Alliance of ALS/MND Associations, contributing perspectives from Kenya and sharing insights on the challenges facing ALS/MND communities across Africa. He has participated in international professional development programmes including the Global CRLI Program and the Virtual ALS TDI Summit. He served for more than thirty years in Kenya’s Ministry of Agriculture and Livestock Development and is a trustee of the Tegla Loroupe Peace Foundation. Philip is an Australia Awards Scholar, former Australia Alumni Ambassador, and holds a Master of Science in Environmental Management (Sustainable Development) from The University of Queensland. An enthusiastic recreational runner, he regularly completes half-marathons and is training toward his first full marathon.
Stacy Lewin Farber, MD
USA
Dr. Stacy Lewin Farber resides in southern New Jersey with her husband, Dan, their two sons, Zachary and Ethan, and a devoted and loving golden doodle named Charlie. While previously practicing as an obstetric anesthesiologist, Stacy’s journey took an unexpected turn when she was diagnosed with sporadic, limb-onset ALS at the age of 56 in February 2021.
Empowered by the unwavering support of her family, friends, and caregivers, Stacy is resolute in leveraging her dual perspective as both a physician and an ALS patient to help raise awareness of ALS and make meaningful contributions to the ALS community. In spring 2022, she graduated as a NEALS research ambassador and has since functioned as a consumer reviewer for the DoD CDMRP, while actively participating as a patient member in various pharmaceutical advisory panels.
Despite battling debilitating disabilities, Stacy sits on several committees for I AM ALS, is involved with ALS TDI, has been a patient fellow for the International Symposium on ALS/MND and most recently joined the Patient and Caregiver Committee for the International Alliance of ALS/MND. She also sits on committees for Home Care Services and Research for ALS United Mid-Atlantic.
Stacy is immensely grateful for the exceptional care she receives at Temple’s multidisciplinary ALS clinic and has joined the patient advisory board of the Temple ALS Center of Hope as a dedicated ALS proponent. It is Stacy’s hope that her work helps to advocate for, and empower people affected by ALS to live their lives to the fullest.
Norman MacIsaac
Canada
Long before ALS turned his world upside down, Norman MacIsaac used to travel the world supporting local efforts to fight poverty and injustice. He has lived and worked in Africa, Latin America, and Asia. He has been a leader in the field of international development and a critical voice arguing against top-down development. His 2019 TEDx Talk in Montreal, “Surthriving with ALS: Lessons from international development”, argues in favour of the tremendous potential of local initiatives and authentic grassroots voices in the struggle for a more just world, be it to combat poverty or to access novel treatments for ALS.
He has been on the Board of Directors of ALS Quebec for over six years, and on the ALS Canada Advocacy Committee for over five years. He has been participating in the ALS Caucus since 2015 and has been a vocal advocate, through the media and through his website www.more-than-ALS.com, since his diagnosis in 2014. He has also completed the ALS Research Ambassador Training Program. His parliamentary petition to improve timely access to novel ALS treatments received 25,672 signatures — more than ten times any previous ALS petition in the history of Canada. The petition was backed by the multi-party ALS Caucus in a press conference with Mr. MacIsaac and members of parliament representing all five parties in the House of Commons.
His 2019 book, The Best of the Worst News: Tales of Inspiration from Around the World and My Life with ALS, intertwines autobiographical tales spanning five continents and as many decades — stories that are in turn touching, humorous, witty, heartbreaking, and always uplifting and inspiring. The second edition in U.S. English was published in 2020.
Norman MacIsaac lives in Montreal with his wife of 34 years. He has two sons and one daughter.
Felipe Ocampo, MD
USA
Born and raised in Colombia, Dr. Felipe Ocampo is a medical surgeon who currently resides in California with his loving husband and five dogs. His experience is based in emergency room care, and he has lived and worked in rural areas throughout Colombia. While attending medical school, he was a representative and advocate for medical students’ rights. He has been a member of multiple medical associations to promote healthy habits in his community, as well as having encouraged international medical experiences in his school.
Felipe’s life changed drastically when he was diagnosed with ALS/MND in February 2021.
Unfortunately, he realized that many of his colleagues, friends, family, and himself didn’t know the depths of this disease. He became a member of ACELA, the Colombian ALS/MND Association, and it has become his mentor throughout this journey. He feels lucky because his family and friends are his main line of support, all the while dedicating his time to increasing ALS/MND awareness around his community and colleagues. In addition, he enjoys traveling and spending time with his loved ones.
Orlando Ruiz
Colombia
Orlando Ruiz is a mechanical engineer from the University of Kaiserslautern in Germany. He holds a master’s degree in business administration from the Universidad del Valle in Colombia.
He was diagnosed with ALS in March 2001 when he was working in a multinational company in Cali and was preparing to start a master’s degree in the United States. Because there was no organization dedicated to ALS, he thought to found the Colombian ALS association, but it was then difficult to find people with ALS because social media did not exist, so this became a reality a few years later than initially planned.
After his diagnosis, he didn’t think he would survive more than a couple of years, as people with ALS are often told, nor did he imagine that his life would have major changes beyond the effects of ALS. However, he married in 2005 the woman who is the love of his life, Rocio Reyes.
With the support of his wife, father and another family affected by ALS, he founded the Colombian ALS association, ACELA in 2008, an organization that he has led to date and that has benefited more than three thousand families in Colombia and other Latin American countries. Despite his many activities as president of ACELA and the basic activities that take too long for a person with ALS, he wants to further integrate ACELA with the Alliance, and he considers the PCAC to be a way to do this and to serve the ALS community more globally.
Marcela Santos
Colombia
Marcela Santos is a psychologist with a master’s degree in Social Inclusion of People with Disabilities. Her father, Alfredo Santos, lived with ALS/MND for 16 years, and she was one of his primary caregivers. He had a very positive outlook on ALS/MND, and the way he embraced it was passed to his daughter. He passed away on February 8, 2020.
She has dedicated 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 people living with ALS/MND and their caregivers in Colombia since 2014. Besides her academic history and professional experience, the personal experience with her father allows her to give much more meaningful care.
Gudjon Sigurdsson
Iceland
Gudjon Sigurdsson has been a member of MND Iceland since his diagnosis of ALS/MND in 2004. He became the Chairman of the Association in 2005 and continues to serve in that role. He was a member of the Board of the International Alliance from 2006 to 2008, became Chairman of the Alliance from 2008 to 2012, and returned as a member from 2018 to 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.”
Leanne Sklavenitis
Australia
Leanne Sklavenitis has been passionately involved in the fitness and wellbeing industry for over 35 years, working as a group fitness instructor, personal trainer, lecturer, facilitator, business consultant and professional speaker. She has travelled the world, motivating and inspiring people to live their healthiest lives and continues to do so, despite being diagnosed with MND/ALS in 2017.
Leanne grew up in Melbourne, Australia, and is a loving mother to her adult daughter. She now resides in sunny Queensland with her husband, Steve.
Despite losing the ability to speak, Leanne continues to present regularly to organisations and at events on the topic of overcoming adversity and the incredible power of choice. In 2023 she authored her second book, a memoir titled Finding Awesomeness Through Adversity. Leanne’s story is a heartfelt narrative about resilience amidst adversity, showcasing her indomitable will to live fully despite the circumstances she faces living with MND.
Leanne has been actively involved in MND research into metabolism for more than six years. She is part of the Lived Experience Expert Driving Team for The MND Research Collective, as well as an ardent supporter of FightMND and MND Australia, advocating for greater funding and awareness.
Leanne is honoured to be joining the PCAC and wants to continue to use the power of her lived experience to inspire others living with MND/ALS.
Paula Trefiak
Canada
Paula Trefiak is part of a familial ALS family, has lost a family member to ALS, is an ALS gene carrier, and is living with ALS. She lives in Regina, Saskatchewan, Canada.
Conny van der Meijden
Netherlands
Conny van der Meijden was born in 1960, is married to René, and has two adult children. She was diagnosed with ALS/MND in September 2001 after experiencing vague symptoms for three years.
Conny began her career as a district nurse and, after holding several management positions, stepped down from her role as Head of Human Resources in 2002. She has served as a board member of the ALS patiëntenvereniging (ALS Patient Association) since 2015, where she is responsible for the healthcare portfolio. She is also a volunteer with Spierziekten Nederland, an advocacy organization for people living with muscle diseases in the Netherlands, and with her local hockey club.
ALS patiëntenvereniging has a unique partnership with the ALS Center Netherlands and the ALS Netherlands Foundation. The ALS Center focuses on diagnosis, research, clinical trials, translational research, and improving quality of life and care. The ALS Netherlands Foundation raises funds to support this work. The ALS Patient Association represents the interests and voices of people living with ALS/MND, provides peer support, and advocates on behalf of patients in research and policy. Together, these organizations are known as “the triangle.”
Conny is no longer able to speak understandably, and her arms and legs are almost completely paralyzed. Despite this, she remains full of energy and enjoys travelling and staying active.
Staff Liaison
Julia Simon, BCom
Canada
Julia Simon holds a Bachelor of Commerce in Marketing from the John Molson School of Business in Montreal, Canada. Most recently, Julia worked in open source community building in the technology industry. In 2019, she experienced a major burnout, which eventually led her to share her story through conference presentations about normalizing mental health challenges and advocating for systemic change in the workplace. She is a human-centred generalist who is authentically curious. Julia speaks English, French, German, and Spanish and enjoys building meaningful connections with people.
When her father was diagnosed with bulbar-onset ALS-FTD in January 2022, she became one of his primary caregivers. He passed away in April of that year, leading her to learn more about death positivity, medical assistance in dying, and end-of-life care. Since then, she has completed training in peer support and as an end-of-life doula. Julia enjoys spending time with her son, Felix, and her cat, Flash.