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.
The ALS Association, USA
I was diagnosed with ALS on April 8, 2014. My family and friends have been greatly affected by the diagnosis. Since then, we have been determined to serve our local and state associations (The ALS Association and the MDA) and help others to live my motto: “Love Life, LIVE LIFE!”
I have been involved with the National ALS Association on Capitol Hill, as a member of the Patient Advisory Board for Barbara Newhouse’s listening tour. I was also a member of the ALS Registry Taskforce in updating the website and the data dispensed and collected.
I was asked to read Lou Gehrig’s speech at an Arizona Diamondbacks MLB game. The following year, I was asked by the team to throw out the Ceremonial First Pitch (video here). I am a volunteer at the Barrow ALS Lab at St. Joseph Hospital and at the ALS Association Arizona Chapter office. Those are 2 of the most important organizations in my life. Visit my website: alslovelifeLIVELIFE.com.
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.
Marcela 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.
Diagnosed with ALS in September 2013 at the age of 41, Carol has surpassed the two- to three-year life expectancy that was originally given by her neurologist. At the time Carol was an active member of her community, working full time with the Canadian Mental Health Association as an art therapist. Currently living in Ottawa with her husband Travis, Carol is an Ambassador for the ALS Society of Canada. She has participated in advocacy for ALS awareness and research funding with the University of Ottawa, various media agencies, and the federal government of Canada. Having lived in four countries, over ten cities, and having travelled extensively worldwide, Carol has a passion for international collaboration. To learn more please visit her blog at www.livelovelaughwithcarol.com.
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.