Heads Up! 2015 Allied Professionals Forum

MNDA Symp Logo

10 December 2015
JW Marriott Grande Lakes
Orlando, FL, USA



The International Alliance of ALS/MND Associations will host a one-day Allied Professionals Forum in Orlando, FL, USA on 10 December 2015. This seminar, specifically for allied health and social care professionals, is held between the International Alliance Meeting (8-9 December) and the International Symposium on ALS/MND (11-13 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 would 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 27 April 2015.
The deadline to receive abstracts will be 15 June 2015 (EXTENDED).

Abstracts will only be accepted on the official abstract submission form, which can be found here: ABSTRACT FORM (link will not be active until 27 April)

We invite you to submit a presentation abstract that addresses one of our key themes for 2015. The themes are described below.


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

Blue Sky Thinking
Have you implemented creative, out of the box, practices or models of support? How did they impact on outcomes for people with ALS/MND?

Connecting and Communicating
How are you improving the independence and communication for people living with ALS/MND? What are the practical applications of electronic solutions? How do you access equipment or devices? How do you communicate remotely with, and between, patients and health professionals?

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

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?

Caring for Carers
How do you support carers and prevent burnout? How do you address conflicts in the home? What are the ethics involved with decision-making? Have you developed programs for long-term carers or for children?

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

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?

Relationships and Connections
What is available to support and retain sexual and personal relationships within an ALS/MND family?  What do you say when asked about sex and sexuality? What should we say? What do you recommend as solutions to issues?  How do we deal with our own inhibitions?

Support for Staff
How do you keep your staff and yourself healthy? How do you manage stress, high workloads or difficult issues?  What strategies do you use to address compassion fatigue, 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?



Steve Bell (Co-Chair)
Director of Regional Care (North), The MNDA of England, Wales and Northern Ireland
Rodney Harris (Co-Chair)
Chief Executive Officer, MND Victoria, Australia
Carol Birks
Executive Director, MND Australia
Aisling Farrell
Sara Feldman
Clinical Liaison, The ALS Hope Foundation, USA
Kimberly Maginnis
Chief of Care Services, The ALS Association, USA


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.