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2015 Meetings

JW Marriott Grande Lakes, Orlando, FL, USA

December 2015

Below, you will find archived presentation materials from the 23rd Annual Alliance Meeting and Ask The Experts session, held on 8-9 December 2015, and the 13th Annual Allied Professionals Forum, held on 10 December 2015.

We have shared materials from all presenters who gave us their permission, and the information is organised by event below.

Feel free to browse, and if you have questions, get in touch with the Catherine Cummings, Executive Director, for more information.

2015 Alliance Meeting

View or download the 2015 Alliance Meeting Agenda and Abstract Book.

For each presentation, you can click the title to watch on YouTube.

If you wish, you can browse all of the Alliance Meeting presentation videos at once on our 2015 Alliance Meeting YouTube playlist!

Opening Remarks from the GM: Year In Review – Rachel Patterson, General Manager

Argentine Seawater Bucket Challenge – Pablo Aquino, The ALS Association of Argentina

Orchestrating Understanding: From Ice to Icons – Janet Nash, MND Australia

Making the Right Investment Decisions – Sally Light, MND Association of England, Wales and N Ireland

How Does ABrELA Allocate Funding and Resources? – Tatiana Mesquita e Silva, ABrELA

Challenges Faced to Provide Services for ALS/MND Patients in India – Dr. Hemangi Sane, Asha Ek Hope Foundation

Social Media and Online Services In Building Multidisciplinary Team – Dr. Lev Brylev, Martha-Mary Medical Center “Miloserdie”

Opportunities and Challenges – Wang Shunzhen, Beijing Oriental Rain ALS Care Center (BORACC)

Virtual Support Groups – Jennifer Klapper, The ALS Association (Philadelphia Chapter)

Supporting the Children of PALS – Jodi O’Donnell-Ames, Hope Loves Company

Caring for Caregivers – Marcela Santos, ACELA

Fleet of Equipment and ALS Centers – Christine Tabuenca, ARSLA

Care for PALS Action – Bingcang Yan, Shaanxi ALS Association

The Future of Communication for ALS/MND – Aki Yuki, Japan ALS Association

The Partnership Programme – Sara Feldman, ALS Hope Foundation and Efrat Carmi, IsrALS

Baltic Bridge – Kathy Mitchell (PowerPoint only – coming soon!)

Relay of Love – Kiki Qu, Taiwan MND Association

Introducing the Strategic Plan for 2016 and Beyond – Carol Birks, MND Australia (Chairwoman)

View the Strategic Plan for 2016-2019

View a review of outcomes for the Strategic Plan 2012-2015

Scientific Update – Dr. Terry Heiman-Patterson (PowerPoint only – coming soon!)

City Swim Presentation – Gorrit-Jan Blonk, ALS Netherlands

Invitation to Dublin 2016 – Aisling Farrell, Irish Motor Neurone Disease Association

2015 Ask The Experts

Watch video of the 2015 Ask The Experts session, hosted by The ALS Association! This session was live-streamed to accommodate people living with ALS/MND and their caregivers abroad, and questions were accepted through social media. A summary of the session appears below.

Lucie Bruijn, PhD, MBA, The ALS Association’s Chief Scientist, discusses some of the exciting new research projects supported by The ALS Association, including how collaboration with academia and industry partners has contributed to a better understanding of the disease and facilitated preclinical trials and studies. She then facilitates a discussion with a panel of international researchers:

  • Richard Bedlack MD, PhD, MS. Dr. Bedlack is Associate Professor of Neurology and Director, Duke ALS Clinic. He also leads ALS Untangled, a network of physicians and researchers investigating alternative and off-label treatments for ALS. Dr. Bedlack’s recent research also resulted in the identification of a newly associated gene, which is thought to play a role in inflammations and damaged cell clearance associated with ALS.
  • Michael Benatar, MD, PhD. Dr. Benatar is Professor of Neurology and the Chief of the Neuromuscular Division in the Department of Neurology at the University of Miami. He is the first incumbent of the Walter Bradley Chair in ALS Research. With a focus on familial ALS and genetics, Dr. Benatar leads the CReATe Research Consortium which investigates the relationship between phenotype and genotype in ALS and the development of biomarkers that might be useful in therapy development.
  • Ammar Al-Chalabi, MD. Professor of Neurology and Complex Disease Genetics, and Director of King’s MND Care and Research Centre at King’s College in London. Dr. Al-Chalabi’s research focuses on understanding what causes or modifies ALS as a way of finding new, effective treatments. His studies involve genes, lifestyle and the different clinical patterns of ALS. Dr. Al-Chalabi’s current research studies investigate the genetic susceptibility in ALS, and the relationship between cognitive changes and physical symptoms in ALS.

2015 Allied Professionals Forum

View or download the 2015 APF Programme and Abstract Book.

All presentations have been made available by our presenters and appear below.  For each presentation, you can click the title to watch on YouTube.

If you wish, you can browse all of the APF presentation videos at once on the Alliance’s 2015 APF YouTube Playlist.

About the International Alliance of ALS/MND Associations – Carol Birks, Australia

Caregivers’ academy: A MULTIdisciplinary support program – Tanya Peterson, USA

Developing a carer-led approach for support – Steve Bell, UK

Identifying and addressing the support needs of family caregivers of people with ALS/MND: a feasibility study – Samar Aoun, Australia

Communicating with PALS/MND that have dementia – Tammy Soukup, USA

Transitioning a research tool into clinical practice: Use of the Edinburgh cognitive and behavioral ALS/MND screen in ALS/MND clinic – Judy Lyter, USA

Parental disclosure of familial ALS/MND diagnosis and mutation status to children: Perceptions of young-adult offspring – Samantha Neumann, USA

Psychosocial benefits of participating in research: A supportive tool for ALS/MND young carers – Melinda Kavanaugh, USA

Burnout can happen to patients too: How to address in the clinical setting – Rebecca Axline, USA

From subjective to objective: Useful tools for initiating end-of-life discussions with ALS/MND patients – Shivangee Thorne, USA

PDA (Personal Death Awareness) – Laurie Fieldman, USA

What ALS/MND health professionals need to know about today’s respiratory therapies – Jennifer Armstrong, USA

Improving the respiratory referral and assessment pathway – Julie Young, USA

Updates in the evaluation and treatment of airway protection and dysphagia in ALS/MND – Emily K. Plowman, USA

Improving the eating experience for people with ALS/MND – Crystal Collinge, Canada

Anticipatory approaches to wheelchair provision – Karen Pearce, UK

Assistive equipment use by people with ALS/MND in Australia – Karol Connors, Australia

Voice banking: Just do it! – Jennifer Benson, UK

Using mainstream technology as a communication system for people with ALS/MND – Alisa Brownlee, USA

Thank you to the ALS Hope Foundation for their continued support of the Allied Professionals Forum!

ALS Hope Foundation Logo

 

Thank you to all of our wonderful presenters and to our member host, The ALS Association, whose generous hospitality made the 2015 Meetings possible.

Here is our group photo from the 23rd Annual Alliance Meeting, with over 80 members and friends in attendance!

ALS Group 002
Thank you to our 2015 Platinum Sponsor, Cytokinetics! As a leader in muscle biology research, Cytokinetics is dedicated to its mission of improving the lives of people confronting devastating diseases of impaired muscle function.

 

Cytokinetics

 

Primary Sidebar

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

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

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

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

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • 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

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • 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

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

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

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

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

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

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

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

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • 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

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

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

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

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

Learn more about the March of Faces

ALS/MND Meetings

  • Annual Meetings 2020
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Past meetings

  • 2019 Meetings
  • 2018 Meetings
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  • 2016 Meetings
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  • 2013 Meetings
  • 2012 Meetings
  • 2011 Meetings

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

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