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INFORMATION UPDATE
April 2016 | Issue 45


A Message from the Chairwoman

Carol Birks, MND Australia


Dear Members and Friends of the Alliance,

The year is well underway for the Alliance. Committees have been established to review policies and the expansion of opportunities for people living with ALS/MND to meet and network at the Annual Meetings. The Board met in March and reviewed the feedback received on the Rights of People with ALS/MND Guideline. The final approved document is available here. We encourage you to take this document to your respective governing bodies for formal approval. Once approved, please let our GM know and we will add your organisation's logo to strengthen its value as an advocacy tool for members.

The actions and outcomes for 2016 identified by members at the meeting in Orlando have been developed into an Operational Plan for the year which is being finalized. We will share with members in the next few weeks and invite you to contact us if you would like to be involved in providing your time and expertise to achieve any of these outcomes. In addition to our core business and usual member services, this plan will guide our operations throughout 2016.

Recruitment has now commenced for an Alliance Administrative Assistant to work with Rachel up to 15 hours per week. It is preferred that this person will be a resident in the US to enable a close working relationship and appropriate supervision. If you know anyone who might be suitable for this position please contact Rachel for further information and a copy of the job description. A public posting will be made soon!

It is shaping up to be a busy year once again. Rachel our General Manager has already undertaken a site visit to Dublin and attended a number of key meetings on our behalf, which she has outlined below. The next big date in the ALS/MND calendar is Global Day, and Rachel is working on a great idea with Directors Gorrit-Jan Blonk and Barb Newhouse. Stay tuned for updates! We look forward to support and engagement throughout the year – together we can make a difference!

Warm Regards,


 

Carol Birks, Chairwoman

A Message from the General Manager

Rachel Patterson, General Manager


It has been an incredibly busy quarter here at the Alliance! I have spent the last few months continuing to grow our programs while traveling both in the US and abroad to represent our dedicated global community.

In February, I traveled with friends from the IMNDA and the MND Association to visit our 2016 conference site in Dublin, Ireland. We are in the final phases of planning the 2016 Alliance Meeting, APF and Symposium, which are now just 9 months away! With the help of our diligent Treasurer, we have set registration fees for both the Alliance Meeting and APF, and registration is open. 
 
In March, I was honored to attend the Airlie Clinical Trial Guidelines Workshop, hosted by Dr. Hiroshi Mitsumoto in Warrenton, VA, USA. Some of the best neurologists and researchers from across the globe came together to draft a document that will guide the development of treatments and the management of clinical trials. The recommendations presented by these researchers were insightful and complex, with a particular focus on incorporating the latest breakthroughs in our understanding of ALS/MND and learning from failed trials in the past. Check out our live tweets for a review.

Pictured at Airlie House with Evy Reviers of ALS Liga Belgie

Last month, I also had the opportunity to touch base with members of Collaboration for a Cure, a group of North American ALS/MND organizations that has come together in the interest of sharing goals, information and community, to the benefit of PALS and CALS across the region. (This group includes our members The ALS Association, ALS Canada, ALS Hope Foundation, ALS TDILes Turner ALS Foundation, and others.) We are working on some exciting projects that I hope will expand to benefit all Alliance members. I will keep you apprised as these efforts grow, and I am always happy to see our members working together in the interest of our shared vision!

As always, I want to thank all of you, our delegates, friends and community members, for supporting the Alliance. Your many contributions keep our community growing. I am moved by the spirit of cooperation that I witnessed across the world, as ALS/MND organizations put their differences aside to work toward a common goal. Together, we are united in the worldwide fight against ALS/MND!

Feedback: Value of Membership

Rachel Patterson, General Manager

We want to hear from you!

Members, please share feedback so that we can learn more about what the Alliance means to you and how the Alliance serves its membership.

Submit a testimonial - share your story here!

Rights of People with ALS/MND: Advocacy Tool

Rachel Patterson, General Manager

We have recently revised our guideline on the fundamental rights of people living with ALS/MND. Find it here! This document was revised by the Board of Directors with input from our membership. Thank you for your feedback and comments!

We are encouraging all member organisations to formally endorse this document. Please take our rights document to your association's Board of Directors for approval and let us know the outcome.

Our goal is to add the logo of each member association that accepts this document.

The more support we receive, the more effective this guideline will be as a tool to advocate for the rights of people with ALS/MND around the world!

Contact Rachel if you have any questions.

Submit Abstracts for the Allied Professionals Forum

Rachel Patterson, General Manager

This is a reminder that we have officially distributed the Call for Abstracts for the 2016 Allied Professionals Forum, with a deadline of Monday, 4 May. Please encourage healthcare professionals in your clinical community to submit and attend! Follow this link to submit.

Member Update: MND Scotland Working with the Scottish Parliament

Niamh Callan, Communications Officer, MND Scotland

 

MND Scotland is delighted by the announcement from the Scottish Government that access to communications equipment will become a statutory right for people with Motor Neurone Disease (MND).
 
MND Scotland campaigned for this legislative change through our ‘Let me Speak’ campaign, which was launched during MND Awareness Week in June 2015. The campaign highlighted the devastating impact of voice loss for many with MND and the need for a statutory duty to provide communications equipment.

In response to our campaign, First Minister, Nicola Sturgeon, announced in September 2015 that the Scottish Government would introduce an amendment to the Health Bill going through Parliament, to make access to communications equipment a right. On 3 March 2016, the Bill was passed and will now become legislation.



In May, Scotland returns to the polls to elect our next Scottish Government.  In advance of this, MND Scotland developed a Manifesto for people affected by MND, in consultation with people affected by the illness across Scotland. It sets out priorities we hope the next Scottish Government will undertake:
  • Prioritise research into MND
  • Ensure the needs of those affected by MND are met now
  • Support carers
  • Alleviate the financial burden of MND
MND Scotland is calling on all candidates for the upcoming election to support our manifesto.

We have been delighted with support received at party conferences over the past few weeks, including support from the First Minister. For more information please visit bit.ly/MNDS_SP16
 

Member Update: ALS Canada Research Program

Rebecca Grima, Director of Marketing and Communications, ALS Canada


At ALS Canada, every day we push forward in efforts to continue to elevate our Research Program, investing in the best science that offers the most promise to slow down ALS or even stop it. We are driven to improve the lives of the 3,000 Canadians managing their journey through ALS, who are losing their ability to speak, walk and eventually breathe because of this disease. Research is the pathway to change the course of ALS. Our vision is to make ALS treatable, not terminal by 2024.
 
In 2015, because of the generosity and dedication from ALS Societies across Canada, our donors and ALS Canada’s partnership with Brain Canada, ALS Canada was able to invest $15 million in ALS research across Canada. To put that investment into perspective, this influx into ALS research represented a 10-fold increase from what we were able to historically invest on an annual basis.
 
The research funded was reviewed by a panel of international ALS experts, who were brought together to judge the projects with the mandate to invest in the research that will move the field forward in the quickest timeframe possible. We focused on building momentum by placing funds into the hands of present and future leaders in ALS research.
 
The ALS Canada Research Program funded 56 investigators at 15 universities in seven provinces across Canada. All are working to uncover answers around how we can diagnose ALS earlier; what role do various proteins play to improve treatment options for people living with ALS; and ultimately how can we slow or stop the progression of the disease.  

Member Update: MND Australia Reports on the Economic Impact of MND

Alison Mudie, Communications and Information Manager, MND Australia

 

MND Australia recently launched a report into the economic impact of motor neurone disease (MND) at Parliament House, Canberra. The Deloitte Access Economics report reveals that in Australia the per person cost of ALS/MND is $1.1 million, dwarfing the annual cost of other health conditions including stroke ($133,108), vision loss ($32,646) and chronic kidney disease ($758).

The total cost of ALS/MND in Australia was $2.37 billion in 2015, comprising $430.9 million in economic costs and $1.94 billion in burden of disease costs.

“The enormity of the cost is akin to the brutality of MND. People living with MND may rapidly develop physical disabilities often forcing them and their carer to withdraw from work prematurely. This loss of productivity places a great burden on families and the economy,” says Ms. Carol Birks, National Executive Director, MND Australia and Chair of the International Alliance of ALS/MND Associations.

The report highlights the costs to government, individuals and families including health system costs, informal care costs and productivity losses. Data that underscores the need for increased government funding into ALS/MND research into treatments that will help people living with ALS/MND to live better for longer – and to reduce the economic impact of this devastating disease.

Following the launch, MND Australia continues to call upon the Australian Federal Government to:

  • Double investment in research to $20 million annually
  • Make MND a National Health Priority
  • Fast-track equal access to services and support
  • Improve cost-effective access to equipment and technology

Visit mndaust.asn.au to download the Deloitte Access Economics Report on the impact of MND in Australia.

Member Update: Martha-Mary Medical Centre "Miloserdie" Hosts Seminar on Multidisciplinary Care in Moscow

Polina Dzagourova, Martha-Mary Medical Centre "Miloserdie"

 
The Martha-Mary Medical Centre "Miloserdie" was proud to host a seminar, "Organization of Multidisciplinary Care in ALS", on 21-23 February, 2016, in Moscow, Russia. This seminar included presentations on international ALS research, quality of life, palliative care, psychological support, how to build a multidisciplinary team, and more.

You can download the agenda here.

Member Update: IPG Receives ALS Patients In Its New Facilities to Provide Care and Guidance

Felicia Macedo, Communications, Istituto Paulo Gontijo

The month of April arrives with many new features at the Paulo Gontijo Institute (IPG). Since March, the IPG is located in a new headquarters, with larger facilities, fully accessible to wheelchairs. The office relocation allows the possibility to provide more care to patients, families and caregivers.

Starting April 1st, IPG will conduct in-person service orientation and social care, free of charge. The aim is to welcome, educate (after diagnosis), on treatment, quality of life and legal rights and, when necessary, refer patients to a medical and multidisciplinary team. The work will be done by a professional team in a private room and should be scheduled by email assistenciasocial@ipg.org.br or by phone (11) 3444-7989.

Member Update: The MND Association of England, Wales and Northern Ireland

Steven Bell, Director of Care-North, The MND Association

 
The MND Association is working hard towards the development of its next 5-year strategy. This will run from 2017 to 2021. Following the success of the Ice Bucket Challenge we will be developing a robust strategy that builds on the legacy of this unexpected windfall. Already we have a number of projects that are being scoped using these funds – a welfare benefits assistance project; developing an understanding of the offering that the Association already makes and should make in the future to children and young people in families affected by MND; work to roll out and train others in the use of the Edinburgh Cognitive Assessment Scale tool for measuring and identifying cognitive change in ALS/MND and the development of an offering for Carers of people living with MND amongst others.
 
We look forward to welcoming 2 international visitors over the next few weeks. One of the new Alliance Directors, Gorrit-Jan Blonk of ALS Netherlands will be visiting towards the end of April, followed by a delegation from Russia in early May who will visit the Association, one of our care centres and other such facilities for people with MND.
 
Finally, we are very pleased to announce the publication of our latest guide for young people aged 13-18. There has been significant revision to our previous publication, and as well as publishing the new guide, electronic access through social media tools and applications are also being developed. The guide can be accessed at www.mndassociation.org/ypinfo.

A Few Words from the Honorary Treasurer

Steven Bell, The MND Association of England, Wales and Northern Ireland


A brief report this time, as we are working currently to agree on the fee structure for the meetings to be held in Dublin, Eire in December 2016. As ever, we will be holding the Annual Alliance Meeting, the Allied Professionals Forum (APF) and the Ask the Experts session. We have been able to reduce some of the prices this year, so we hope to see a great attendance at both the Alliance meeting and at the APF!

The Call for Abstracts for the APF is now open, and I would encourage you all to consider who might be able to attend and present to an international audience of allied health professionals. Please do have a look at the Alliance website for further information.

Member Update: Occupational Therapy Month At ALS Hope Foundation

Mark Goren, Occupational Therapist, MDA/ALS Center of Hope



April is National Occupational Therapy Month in the United States. In honor of this, the ALS Hope Foundation would like to highlight a unique partnership between the students and staff from Thomas Jefferson University’s School of Occupational Therapy and the patients and caregivers from the MDA/ALS Center of Hope in Philadelphia. 

Each January, several groups of students are matched with PALS/CALS from the ALS center who volunteer to take part in an environment competence class with the students, the Environmental Safety Program. Each pair of students visits with our PALS multiple times to assess their environment for safety and independence. The students are supported by their professors and skilled clinicians as part of the process. As a result of these visits, the students are required to introduce five adaptations for safety into the environment that promote independence.  Each adaptation is developed as part of a collaboration between patient, caregiver and the students, ensuring that each person is engaged as a partner in their care.

This collaborative effort has been quite successful and is going into its 4th year now!

Member Update: Shaanxi ALS Association Hosts Hopeful Tour for ALS Patients

Yang Bingcang, Shaanxi ALS Association

On February 28th, 2016, in the early spring thaw, 6 ALS patients and their families and the volunteers took a tour at Xi’an Tang Paradise organized by the Shaanxi ALS Association. They were accompanied by Yang Bingcang, Vice-Chairman of Encephalopathy at the Hospital of Traditional Chinese Medicine and Head of the Association, as well as Feng Guodong, Professor of Neurology at XiJing Hospital and Vice-Head of the Association, and Wei Yuanbin, Vice-Chairman of Encephalopathy at the Hospital of Traditional Chinese Medicine.

At 10:26 AM, ALS patients and their families entered the site with the help of volunteers (all pictured below). 


At Ziyunlou Square, in the warm spring light, everyone expressed their care and compassion for the patients and left multi-colored handprints on the tree that symbolizes hope. Then they wrote down their wishes on colorful papers. They spread positive energy to the patients and the caregivers who provide so much care to this group with an optimistic attitude.

Member Update: Les Turner ALS Foundation Hosts Annual 'ALS New You Can Use'

Jordyn Landberg, Communications and Marketing Manager, Les Turner ALS Foundation



The Les Turner ALS Foundation is holding its annual educational meeting, ALS News You Can Use, this April for ALS patients and their family members. Now in its 14th year, this meeting provides people living with ALS (PALS) and their loved ones with information they are seeking  in regards to education, care, research, clinical trials and support services. 

This year’s program focuses on the legal decisions involved with planning for a disability associated with illness. With a presentation from Janna Dutton from Dutton & Casey, P.C., who specializes in estate planning and elder law, attendees will learn how to develop a legal plan and how to take a proactive role in legal matters.


As part of the Foundation’s mission to provide education and awareness, this event provides tools to PALS and their families on topics that are of great importance to living with ALS, which may not always be touched upon in doctor and clinic visits. Learn more about the Foundation’s support services for people living with ALS.

Register and Book! 2016 ALS/MND Meetings

Rachel Patterson, General Manager

The 2016 ALS/MND Meetings will be held in Dublin and hosted by our generous friends at the IMNDA.


After you register, don't forget to book a hotel in the convention centre area! If you need any special accommodations for PALS, please arrange with the hotel directly. Wet rooms are available at Clayton, Spencer, Gibson, Jury's Inn, Marker, Double Tree, Grand Canal and Radisson Blu. 

For ALS/MND equipment needs, contact the IMNDA to make arrangements at least 6 weeks in advance.

Member Update: ALS Switzerland

Thomas Stucki, Communications, ALS Association Switzerland




In 2007, the ALS Association Switzerland (Verein ALS Schweiz, Association SLA Suisse, Associazione  SLA Svizzzera) was founded under the name of ALS-Vereinigung.ch. One of the founders was suffering from ALS himself and the other was the widowed wife of an ALS patient. Sadly, the founder suffering from ALS passed away in 2012.

The activities of the ALS Association Switzerland focus on providing support and direct help for ALS patients and their relatives. We offer financial support if required, provide wheelchairs and other medical aid and accessories and we assist the persons affected by ALS as patients or as relatives throughout the illness. Among other projects, we organise an annual holiday camp in the Ticino, initiate visits by specially trained ALS nurses in the private environment of the affected patients and arrange regular meetings for patients and relatives. We were also strongly involved in the development of an easy to operate communications app for tablets and smart phones. Furthermore, we organise ALS events in the German and French speaking parts of Switzerland and do our utmost to make ALS better known to a broad public.

A second pillar is the raising of funds for research purposes. In this context we concentrate solely on Project MinE. The ALS Association Switzerland is being financed by private donations and membership fees and does not receive public or government funds.

Member Update: June 2016 - A New Race Organized by ARSLA in Paris

Clement Bergnes, Manager of Communications and Events, ARSLA

 


In June 2016, ARSLA is organizing the first edition of its great race: “
Let’s run, walk and roll against ALS”. The event will take place around a beautiful lake in the heart of the Bois de Vincennes, near Paris.
 
Affecting over 6000 people in France, ALS still doesn’t have a dedicated event, except for the international day. This is now done with this race that we hope to be a great success.

Let’s run, walk and roll against ALS” is a sport event open to all people and to all means of locomotion. Chairs, bicycles, rollerblades, skateboard, scooters or strollers are welcome to run together and fight ALS. Two trails of 5 and 10 km in the heart of the Bois de Vincennes will be proposed. Participants will have the opportunity to use their muscles to support those who can no longer use theirs. The eclectic profile of the riders will be a beautiful picture and a great symbol of people affected by ALS.

This event aims to highlight ARSLA’s actions and is organized a few days before International ALS Day. This race will be a great opportunity to inform people about research funding and about the services ARSLA provides for patients. These are the two main actions of our association. All funds raised will be equally divided on between research and care to fight ALS.
 

Member Update: The ALS Association of Argentina - Recent Activities

Pablo Aquino, Secretary, Asociacición ELA Argentina

CONFERENCE ON GLOBAL ALS RESEARCH UPDATES

On March 31st, in Buenos Aires, Dr. Gisella Gargiulo and Dr. Alejandra Figueredo will deliver a presentation on their conclusions about last ALS Symposium in Orlando 2015. Both neurologists were sponsored by Asociacion ELA Argentina for their travel to Orlando during last December with the purpose of enhancing their training, and now they will share that experience with our local ALS community.



83 ALS PATIENTS ARE ABLE TO COMMUNICATE THANKS TO THE WORK OF OUR ASSOCIATION

Since the implementation of this project, 83 patients have received eye readers thanks to the work of Asociacion ELA Argentina. Our Association facilitates the import of these devices, and their health providers are obliged to cover the cost by law. If they reject the patient’s request, we also facilitate legal intervention for a successful result.
 
BRUNCH FOR FRIENDS

A group of supportive women met in La Plata (Buenos Aires) on last March 17th, within the framework of our social activities to raise ALS awareness. They shared a very nice brunch and raised fund for our Association. Many thanks and love to Monica Soriano, an ALS patient and permanent guest of our Board of Directors, for organizing this event.
 
KITES FOR HOPE

The Asociacion ELA Argentina is organizing an event for next April 30th, in which people will bring their kites as an expression of hope to find a cure for ALS. This will take place in Mar del Plata, the most popular beach of Argentina, by the Atlantic Ocean.

ALS Quest: Research Opportunity for PALS/MND Worldwide

 
Researchers at the University of Sydney in Australia are conducting a case-control study to identify risk factors in ALS/MND. They are collecting data through an anonymous, online questionnaire: ALS Quest.

This questionnaire is available in more than 15 languages so that risk factors can be compared across different countries and cultures.

Please consider participating in ALS Quest and distributing this link to people with ALS/MND in your region. To learn more about ALS Quest, visit their website or contact Dr. Jane Parkin Kullmann.
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