The PALS & CALS Advisory Council (PCAC) is charged with helping the Board of Directors of the International Alliance of ALS/MND Associations consider and include in its work the wide-ranging opinions and ideas of people with ALS/MND and caregivers to people with ALS/MND from across the globe.
Chair of the PCAC
Sara Feldman, PT, DPT, ATP, is the Physical Therapist and Assistive Technology Professional at the MDA/ALS Center of Hope at Temple University Lewis Katz School of Medicine where she has been serving people with ALS/MND for more than 25 years. In addition to clinical care, she is involved in clinical trials, education, and the use of assistive technology. Dr. Feldman is the Clinical Liaison for the ALS Hope Foundation in Philadelphia. She served on the Board of Directors of the International Alliance of ALS/MND Associations from 2013-2019; chairs the PALS and CALS Advisory Council; and co-chairs the Allied Professionals Forum. She received the inaugural Allied Health Professional Award in December of 2018. She is a co-founder of the Northeast ALS Consortium (NEALS) Physical Therapy Committee and served as the Clinical Evaluator representative on the NEALS Executive Committee from 2013 to 2018. She looks forward to the day there is a cure for ALS, but until that time, will continue to be an avid advocate for better care.
A loving husband to his wife Jennifer (at left in photo), Phil Green is also a dedicated father to four children (Arianne, Hunter, Parker, and Whitney). Four years after doing the Ice Bucket Challenge, Phil was diagnosed with ALS in August of 2018 and immediately dedicated himself to making a difference in the fight against this horrific disease. Phil is active in helping multiple ALS organizations and institutions (Team Gleason, I AM ALS, Augie’s Quest, ALS TDI, ALS Cure Project, UW Medicine) with promoting ALS legislation and policy issues, increasing awareness and raising funds to find effective treatments and cures, and providing much needed support services for ALS patients and families. He was privileged to be a Patient Fellow at the 2019 International Symposium on ALS/MND and has also served as a Consumer Reviewer for the DoD ALS Research Program. Phil is a graduate of the University of Washington where he was on the 1991 National Championship UW Football team. He has spent the past 25 years building a career in developing technology solutions for brands such as Sony, Hewlett Packard, and Home Depot.
Ajay is a finance professional with a strong interest in investment and risk management; with extensive experience in the field, he runs his own Investment and Accounting firm, Maplebees Finance.
In addition to their professional work, he is also a tech enthusiast with a keen interest in AI and ML and constantly looking for ways to incorporate new technologies into his work and stay ahead of the curve.
Aside from his professional life, Ajay is the primary caregiver for his mother, who has been battling ALS/MND since 2010. This experience has given him a unique perspective and a deep sense of compassion for those dealing with serious illnesses. As a trustee in the foundation Asha ek Hope (for ALS), he works to spread awareness and support activities that make life easier for ALS patients and their families.
Recently, he also started working with Maplebees Health, a healthy lifestyle platform. The goal is to help people shift towards a healthier lifestyle to prevent lifestyle diseases. He is passionate about empowering individuals to take control of their health and well-being through nutrition, exercise, and mental health practices.
Albert Koo Tee Yih
Albert is a lawyer by profession with 28 years of standing in the areas of family, mediation, civil and commercial dispute. Before being diagnosed with the ALS, Albert was an avid sportsman who enjoyed the outdoor and spent his time pursuing his love for long distance cycling, camping and mountain climbing. It was through this passion that he founded a non profitable organisation “Uniquevarcity of Hikers” that seek to help and empowered the poor people of the mountains and at the same time to improve their socio-economic.
Having being diagnosed in July 2018 and despite being a paraplegic, he continues his legal practice whilst seeking to create an awareness of the disease and causes for equal opportunity of fundings and research trials for ALS patients in Malaysia and this part of the world. He sets 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 believed that “We only die once, but we are living everyday” which encapsulates; empowering patients to live positively and in the present moment.
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 4 years. He graduated from Çukurova University Ophthalmology Clinic as an ophthalmologist and 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 the 1st of June, 2022, Alper is the chairman of ALS/MND Association Turkey.
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.
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 6 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
Leanne 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 6 years. She is part of the 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 has a 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.
My name is Orlando Ruiz, I am a mechanical engineer from the University of Kaiserslautern in Germany and I have a masters degree in business administration from the Universidad del Valle in Colombia.
I was diagnosed with ALS in March 2001 when I was working in a multinational company in Cali and was preparing to start a Masters in the United States. Because there was no organization dedicated to ALS, I thought to found the Colombian ALS association, but it was then difficult to find people with ALS (Social media didn’t exist), this became a reality a few years later than initially planned.
After my diagnosis, I didn’t think I would survive more than a couple of years, as people with ALS are often told, nor did I imagine that my life would have major changes beyond the effects of ALS, however, I married in 2005 the woman who is the love of my life, Rocio Reyes.
With the support of my wife, my father and another family affected by ALS, we founded the Colombian ALS association, ACELA in 2008, an organization that I have led to date and that has benefited more than three thousand families in Colombia and other Latin American countries. Despite my many activities as president of ACELA and the basic activities that take too long for a person with ALS, I want to further integrate ACELA with the Alliance, and I consider the PCAC to be a way to do this and to serve the ALS community more globally.
Angélique van der Lit-van Veldhuizen
In February 2018, Angélique was diagnosed with ALS. Angélique joined the patient advisory council of ALS Patients (APV) in the Netherlands and EUPALS. As a member, she represents the voice of patients living with ALS. Angélique has always had a passion for music and travelling. Despite being in a wheelchair, she continues to enjoy both. Angélique lives in the Netherlands with her husband and two children. Until 2021 she worked as a manager in the town hall busy with inhabitants and staff. By joining the International Alliance of ALS/MND Associations PALS and CALS Council, Angélique hopes a cure or treatment for ALS can be found faster. Hope for a better future after the diagnosis is my wish.
Bruce is an international maritime lawyer of over 40 years practice in Australia, England/Wales & 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 & hill walking) he retains a supporter’s love of rubgy union.
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”