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
USA
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.
Council Members
Stacy Lewin Farber, MD
USA
Dr. Stacy Lewin Farber resides in southern New Jersey with her husband, Dan, their two sons, Zachary, age 24, and Ethan, age 20 and a devoted and loving 8 1/2-year-old 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.
Phil Green
USA
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.
Alper Kaya, MD
Turkey
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 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 June 1, 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.
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 the 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 non profitable organization, “Uniquevarcity of Hikers,” which seeks to help and empower mountain communities by improving their socio-economic conditions.
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 believes, “We only die once, but we are living every day,” which encapsulates empowering patients to live positively and in the present moment.
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 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
Born and raised in Colombia, Dr. Felipe Ocampo is a medical surgeon whom currently resides in California with his loving husband and five dogs. His experience is based, working in the Emergency Room and has lived and worked in rural areas throughout Colombia. While attending medical school, he was a representative and a fighter 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.Orlando Ruiz
Colombia
Orlando Ruiz is a mechanical engineer from the University of Kaiserslautern in Germany. He holds a masters 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 Masters 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 (social media didn’t 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.
Gudjon Sigurdsson
Iceland
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 a member of the Board of the International Alliance from 2006- 2008, becoming Chairman of the Alliance from 2008-2012, and returning as a member from 2018-2024. 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 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.
Leah Stavenhagen
New York & Paris
Leah Stavenhagen is a leader in the ALS community and a published author, who splits her time between New York and Paris. She began a career in management consulting in Paris at 26, and, at the same time, was diagnosed with ALS. Now, more than six years after the onset of symptoms, she focuses her energy on advocacy work, launching Her ALS Story in 2021 to create a vibrant network for young women living with ALS. In addition, she is a board member of the primary French ALS organization, ARSLA, as well as part of the patient advisory committee for Target ALS.
Paula Trefiak
Canada
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.
Conny van der Meijden
Netherlands
I was born in 1960, married to René and we have 2 adult children. I was diagnosed with ALS/MND in September 2001. I had been having vague complaints for 3 years, but I didn’t take them seriously.
I started as a district nurse and after a number of management positions I stopped as head of HRM in 2002. I have been a board member of the ALS patient association since 2015 with the Healthcare portfolio. I am also a volunteer at Spierziekten Nederland, an advocacy organization for all muscle diseases in the Netherlands, and at the local hockey club.
As a patient association for MND we have a unique collaboration with the ALS Center Netherlands and the ALS Netherlands Foundation. In addition to diagnosing, the ALS Center conducts research into the development of ALS and improvements in quality of life and care, trials and translational research. The ALS Netherlands Foundation successfully focuses on fundraising and provides subsidies for research. The ALS patient association, a volunteer organization, is the ‘voice’ of people with MND in the Netherlands and represents the interests of patients in research, subsidies and policy. It also offers peer contact. We call this collaboration the triangle.
I am no longer understandable and my arms and legs are almost completely paralyzed. I am blessed with a lot of energy and I love traveling and being busy.
Bruce Virgo
Scotland
Bruce Virgo 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.
Board Liaison
Marcela Santos
Colombia
Marcela Santos is a Psychologist with Masters 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 a much more meaningful care.