The PALS & CALS Advisory Council (PCAC) is charged with helping the Board of Directors (BOD) 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.
Sara Feldman, Chair
ALS Hope Foundation, USA
Sara Feldman, PT, DPT, ATP is the Clinical Liaison for the ALS Hope Foundation in Philadelphia, PA, USA. Dr. Feldman is the Physical Therapist and Assistive Technology Professional at the MDA/ALS Center of Hope, where she has been serving people with ALS/MND for more than 20 years. In addition to clinical care, she is involved in clinical trials, education and the use of assistive technology. She is Co-Chair of the Northeast ALS Consortium (NEALS) Physical Therapy Committee and is the Clinical Evaluator Representative on the NEALS Executive Committee. She has been an active delegate to the Alliance since 2007 and has participated in three partnerships, with ABrELA, Iceland MND Association and IsrALS. She is committed to ensuring the Partnership Programme continues to expand and grow. In 2015, Sara assumed the role of the Co-Chair of the Allied Professionals Forum. Sara brings a clinician’s perspective and experience to the Alliance Board and until there is a cure, will continue to work towards improving care.
A loving husband to his wife Jennifer, Phil 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.
Angélique van der Lit-van Veldhuizen
In February 2018, Angélique was diagnosed with ALS. Angélique joined the Board of Directors for ALS Patients Connected (APC) in the Netherlands. As a member of the Board she represents the voice of patients living with ALS.
Angélique has always had a passion for music and travelling. Depsite being in a wheechair she continues to enjoy both.
Angélique resides in the Netherlands with her husband and 2 children.
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.
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.
Lee is a software engineer and Salesman, by trade, with over 30 years experience in computer technology that started in the early days of electronic communications in the 1980s. After being diagnosed in 2014 with MND he decided to stop work, partly because of the sheer demands of travelling, but largely because he simply didn’t know how long he had left! Such is this disease’s reputation. Before embarking in the software world, as a Student Biologist at Imperial College, London, in the 1980s, Lee indulged his mind as a keen scientist. It is against this backdrop that he often writes in his blog on the supreme challenges our researchers face with the complexity of the disease, associated research trials and the inevitable, but totally understandable, clamours for approvals of as yet unproven treatment candidates. He genuinely believes that today, we are on the cusp of major breakthroughs that will lead to MND becoming, certainly for some forms of our disease, a manageable chronic condition within just a couple of years. Yes it’s that close.
He works closely with the MND Association in the UK and his primary interests lie in raising awareness and promoting increased research funding. His blog is largely a light hearted read but also contains research posts which he hopes provides the community, and, sadly, the ever revolving door of new members, with information that is helpful on their journey. Although unable to take part in most of his old favourite activities such as skiing, running and walking, Lee is still able to cycle a recumbent trike, and he recommends it highly for anyone with MND. His motto is “No one knows what tomorrow brings”
Jessica was born in London and had a bilingual upbringing in Bogota-Colombia. She relocated to the UK after finishing school, where she completed her university degree in French & German with Business Studies (University of Wales, Aberystwyth), followed by a Masters in Mass Communications from Leicester University (UK) , Masters in Digital Marketing and Advertising from the University of Nebrija (Spain) and a Masters in Digital Marketing from the EAN University (Colombia). Jessica developed as a sales and digital marketing professional leading teams in the UK and Ireland within the technology sector.
In 2014 Jessica´s mother got diagnosed with ALS/MND Bulbar onset, and she decided to return to Colombia early in 2015 to help care for her mother alongside her father. Her mother passed away on 21st February 2018 and shortly after she joined ACELA, the Colombian ALS/MND Association as an active volunteer supporting family caregivers in their ALS/MND journey, and responsible for the growth of their social media presence and communications within their ALS/MND community.
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.
Bernice You is a business strategy, management, and finance professional with global experiences in the technology industry. She has been working for Microsoft for 21 years and is currently working part time. In addition to her business work, Bernice also collaborates with research group at the company on assistive technology projects to bring new experiences and innovations to people with speech and mobility disabilities.
Bernice lives in Washington, USA with her caring husband and three amazing children. She was diagnosed of MND in March 2021. Bernice is keen to devote her effort to drive MND/ALS patient advocacy, quality of life through technology innovations, and research advancement. She is grateful to be on the PCAC council to raise the voice of the PALS community.
Gudjon Sigurdsson, MND Association Iceland
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”