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International Alliance of ALS/MND Associations

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PALS and CALS Advisory Council

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.

Chair of the PCAC

Sara Feldman

Philadelphia, 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.

ALS Hope Foundation

Council Members

Phil Green

California, USA

Phil Green and his wife, Jennifer
Phil Green and his wife, Jennifer

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.

Bruce Virgo

Edinburgh, Scotland

Bruce Virgo

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.

Angélique van der Lit-van Veldhuizen

Netherlands

Angélique van der Lit-van VeldhuizenIn 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.

 

 

 

Norman MacIsaac

Montreal, 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

California, USA
Born and raised in Colombia, Felipe 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.
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 on increasing ALS/MND awareness around his community and colleagues. In addition, he enjoys traveling and spending time with his loved ones.

Albert Koo Tee Yih

Malaysia

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

Turkey

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.

Orlando Ruiz

Colombia

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.

Andrea Matla-Bloem

Andrea Matla-Bloem was a caregiver to her husband, whom she lost to ALS/MND in May 2022.   

She joined ALS Patients Connected as a volunteer board member in September 2022, and board member of EU-PALS and the Alliance´s PCAC in 2023.  

In addition to these appointments, Andrea works full-time in a hospital, but she is determined to do what she can with the time she has available. She is looking forward to learning from the other members of the PCAC and looking forward to making a difference for the ALS/MND community until there is a cure. 

 


Board Liaison

Gudjon Sigurdsson

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''

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”

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About

  • Who we are
  • Board of Directors
  • Committees/Advisory Councils
    • Scientific Advisory Council
    • PALS and CALS Advisory Council
    • Innovation and Technology Council
    • Governance Committee
    • Budget and Finance Committee
  • Staff
  • History
  • Archives
    • Newsletters
    • Meetings
  • Awards

  • Christian Bär, Germany

    Christian Bär, Germany

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Margreth Burger-Saile, Diagnosed 2011 - ALS Schweiz, Switzerland

    Margreth Burger-Saile, Diagnosed 2011 – ALS Schweiz, Switzerland

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Erwin Coppejans, Diagnosed 2007 - ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • UK-Mahmood-Anwar

    UK-Mahmood-Anwar

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Mark Miller

    Mark Miller

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Roy

    Roy
    roy

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Ailsa Malcolm-Hutton, Diagnosed 2013 - MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013 – MND Association of England, Wales and N Ireland

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Danny Reviers, Diagnosed 1979 - ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Osiel Mendoza, Diagnosed 2016 - ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 – ALS Therapy Development Institute, USA

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Marcel R. Wernard, Diagnosed 2016 - ALS Patients Connected, The Netherlands

    Marcel R. Wernard, Diagnosed 2016 – ALS Patients Connected, The Netherlands

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Ian Roberts

    Ian Roberts

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Charlie “Hark” Dourney, Diagnosed 2007 - Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 – Hark ALS, USA

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Angie Bordaen, Diagnosed 2014 - ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

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