• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • Twitter

International Alliance of ALS/MND Associations

  • Members’ Login
  • Contact
  • Join
  • Donate
  • What is ALS/MND?
  • Events
    • Alliance Meeting 2021
    • Allied Professionals Forum 2021
    • ALS/MND Connect 2021
    • International Symposium on ALS/MND 2021
    • Awards
    • Webinars
  • March of Faces
  • Find an Association
  • Support for Members
    • Partnership Programme
    • Mentorship Programme
    • Alliance Support Grant
  • Advocacy
    • Advocacy Toolkit
    • Rights of People with ALS/MND
    • Biogen – Tofersen
    • BrainStorm Cell Therapeutics – NurOwn
    • Collaborative Medicinal Development – CuATSM
    • Cytokinetics – Reldasemtiv
    • Right to Try
    • Unproven (Off-Label) Treatments
    • US FDA Orphan Drug Designation
    • T Regulatory Cell Therapies
    • Amylyx – AMX0035
    • Kadimastem – AstroRx
  • Global Day
  • Resources
    • Submit a Resource
  • Newsletters
  • About
    • About the Alliance
    • Newsletter subscription
    • 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

Click here for Coronavirus (COVID-19) updates

Heads Up! 2014 Allied Professionals Forum

MNDA Symp LogoALLIANCE LOGO SQUARE4 December 2014
Thon Hotel EU
Brussels, Belgium

 

 

 

 

The International Alliance of ALS/MND Associations and the MNDA are hosting a one-day Allied Professionals Forum in Brussels, Belgium on 4 December 2014. This seminar, specifically for allied health and social care professionals, is held between the International Alliance Meeting (2-3 December) and the International Symposium on ALS/MND (5-7 December).

The rapid and relentless progression of ALS/MND poses many challenges for people who live with this disease, as well as their carers and health and social care providers. The Allied Professionals Forum is an opportunity for health professionals to share their experiences, knowledge and strategies of caring for people with ALS/MND with their international peers.

The aim of this program is to promote the exchange of information on good practice and to enable health and social care professionals from all parts of the world to provide the highest quality care possible for people with ALS/MND through education and open dialogue.

Presenters discuss the hands-on work we all do in supporting people who live with ALS/MND. They review and discuss professional strategies and practices and report on their impact. Practice generates huge amounts of evidence supporting good initiatives that can be applied by others. This is the kind of practice-based evidence we’d like you to share!

Make a difference to people with ALS/MND and those that care for them by sharing your knowledge and experience!

The APF Programme Committee is particularly interested in receiving abstracts which:

  • demonstrate practical management strategies
  • provide opportunities to reflect on options and solutions
  • stimulate understanding and learning, and the ability to translate this into practice
  • reflect international differences and similarities in care management

The Call for Abstracts will be distributed on 30 April 2014.
The deadline to receive abstracts will be 1 June 2014.

Abstracts will only be accepted on the official abstract submission form, which will appear on our website. 

We invite you to submit a presentation abstract that addresses one of our key themes for 2014. The themes are described below.

KEY THEMES

Changing Practice – What practice changes have you initiated that have improved outcomes for people with ALS/MND and their families? How were they implemented? Do you have supporting materials to share? 

Blue Sky Thinking – Have you implemented creative, out-of-the-box practices? Were they successful in improving outcomes for people with ALS/MND?

Caring for Carers – How do you support carers and prevent burnout? What if there are conflicts in the home? What are the ethics involved with decision-making? Have you developed programs for long-term carers? Or for younger carers/teenagers?

Support for Staff – How do you keep your staff and yourself healthy? What are your practices to manage stress, workloads or difficult clients?  How do you address compassion fatigue and burnout or support staff members as they confront death and dying?  Are psychological support and team building part of your work? What challenges prevent you from supporting your team?

Fronto-Temporal Dementia/ Fronto-Temporal Lobar Degeneration (FTD/FTLD) – How do you respond to the challenges created by FTD/FTLD? How can we support families dealing with FTD/FTLD? Do you have a creative and effective program or practice that responds well to the challenges created by FTD/FTLD?

Electronic Solutions and Assistive Technology – What are the practical applications of e-solutions? How do you help people get access to equipment or devices? What new assistive technology is available? How can we improve independence and communication for people living with ALS/MND? What about online resources, e-learning, telehealth, Skype and web conferencing as solutions to issues?

Integration of Palliative Care – How has your team integrated palliative/supportive care into your practice? How are you managing the interface between palliative care provision and the other services people need?

Respiratory Support and Nutrition – How do you support family carers to work with non-invasive and invasive ventilation or PEG/RIG placements? What techniques have you used to improve nutrition before or instead of PEG/RIG? How do you manage the risks and issues when nutrition support is required but PEG/RIG is not possible?

International and National Exchanges – Have you participated in the sharing of resources, information or staff members? What were your objectives and strategies?  What were the outcomes? Have you done outreach work in underserved areas in your or other countries?

 

APF PROGRAMME COMMITTEE

Steve Bell (Co-Chair), MND Association of England, Wales and N Ireland (UK)

Rodney Harris (Co-Chair), MND Victoria (Australia)

Carol Birks, MND Australia (Australia)

Sara Feldman, The ALS  Hope Foundation (USA)

Richard Sloan, Palliative Care Physician (UK)

Evy Reviers, The ALS League of Belgium (Belgium)

The Programme Committee urges you to use this first notice to start thinking about your practice and what you might have to share with your fellow practitioners.

Steve Bell and Rod Harris, Co-Chairs

Primary Sidebar

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

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

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

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Ian Roberts

    Ian Roberts

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Josée Kolijn-de Man, Diagnosed 2015 - ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 – ALS Patients Connected, The Netherlands

  • 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

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

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

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014, Canada

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014, Canada

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

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

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Susan Anderson, Diagnosed 2014 - Hope Loves Company, USA

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

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

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

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

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

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

  • 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

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

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

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

Learn more about the March of Faces

Allied Professionals Forum Registration

The International Alliance of ALS/MND Associations will host a virtual Allied Professionals Forum spread over two days to accommodate time zones on 3 – 4 December 2020.

Click here to register for the Allied Professionals Forum

Footer

Support the Alliance

Please donate

Please consider making a donation to support our work. Thank you!

Latest Tweets

  • Creativity takes Courage! (Henri Matisse)In celebration of World Art Day (April 15th), tag an artist or share this… https://t.co/yfn4D6gmmA April 14, 2021 12:00 am
  • https://t.co/aKxWOqKnDZ @AsociacionELAar #ALSMNDWithoutBorders April 13, 2021 8:48 pm
  • maybe there is an opportunity for @TaylorMadeGolf to outfit wheelchairs around the world! #ALSMNDWithoutBorders https://t.co/qWFfwdJ3Eg April 13, 2021 3:36 pm

Keep in touch

Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations.

Return to top of page
  • Disclaimer
  • Privacy notice & Cookies
  • Sitemap

Copyright © 2021 The International Alliance of ALS/MND Associations. All rights reserved.

Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login