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INFORMATION UPDATE
January 2014 | Issue 36
A Message from the Chairperson
Carol Birks, MND Australia
Dear Members and Friends of the Alliance,
I am honoured to have been elected by members as the Chairwoman of the Alliance and look forward to working with you all in the coming three years.
I welcome the two new Directors appointed at the Annual General Meeting, Sara Feldman (ALS Hope Foundation) and Lindee David (ALS Canada), whose depth and breadth of experience will be a great asset to the Alliance Board. I am also pleased to report that Jens Spanfelt (Muskelsvindfonden) and Evy Reviers (ALS Liga Belgie) were elected to serve a second three-year term, and we look forward to their continued contributions.
I would like to thank outgoing Director Jane Gilbert (ALS Association) for her commitment to the Alliance over the last three years, and of course our interim chairwoman, Wendy Abrams (Les Turner ALS Foundation), for stepping into this role at a very difficult time for the Alliance. Under Wendy’s leadership, the Alliance maintained momentum and achieved most of our 2013 goals; it was a pleasure and a privilege to work with such a passionate supporter of the Alliance and people living with ALS/MND.
At the Meetings in Milan, a number of key decisions were made. The Board of Directors recommended to members that subscription fees be increased from July 2014 onward, and this proposal was approved by the membership at the AGM. Following a review of the Strategic Plan 2012-2015 and the outcomes achieved in 2013, six working groups were established: Membership, Partnerships, Programmes, Income Generation, Advocacy and Research. We will provide more information as these groups develop in the coming months.
I am very pleased to report that the Board agreed to extend the Alliance Coordinator position for a further 12 months and that our current Coordinator, Rachel Patterson, has accepted this offer. The Board looks forward to working with Rachel to meet your needs and to support her to continue to grow and strengthen the Alliance.
This year, I returned from the International Meetings on ALS/MND filled with optimism and admiration for the army of people living with ALS/MND, carers, associations, health professionals, neurologists, scientists and researchers from across the globe, all united in working towards a world free of ALS/MND.
The spirit of the Alliance is epitomised by the 2013 recipients of our two prestigious awards. The Humanitarian Award was presented posthumously to Dr. Jeffrey Deitch (ALS Hope Foundation, USA). Through activism, leadership and collaboration, Jeff’s vision was to ensure that every person with ALS/MND had the best opportunity to live well. The award was received by his friend and colleague Dr. Terry Heiman-Patterson, who gave a moving tribute to honour his work and commitment to people living with ALS/MND and the Alliance.
The Forbes Norris Award was presented by Dee Holden Norris to Professor Leonard Van den Berg (of the Netherlands), who exemplifies the memory of Forbes Norris by being both a gifted scientist and a compassionate clinician.
In her final act as Interim Chairwoman, Wendy Abrams also honoured Dee Norris, who will be retiring this year, with a gift from the Alliance to acknowledge her contributions as a founding member of the Alliance and the initiator of the Forbes Norris Award.
My heartfelt thanks to the fantastic MNDA team, who organise the Symposium each year; to the host association AISLA and their fabulous team of volunteers; to Wendy Abrams, for stepping in as Interim Alliance Chairwoman; to the Alliance Board of Directors and our members; and last, but not least, to the Alliance Coordinator, Rachel Patterson, for her hard work and commitment to the International ALS/MND community over the past 12 months.
I'd also like to take a moment to recognise the generous sponsors of the 2013 Allied Professionals Forum: The ALS Hope Foundation, Biogen Idec, the MDA, and Cytokinetics. Thank you for your commitment to our cause and to educating future ALS/MND healthcare professionals around the world.
Finally, I wish you all a very Happy New Year and thank you for the opportunity to serve you as Chairwoman.
I look forward, with your support and contributions, to a very productive year ahead!
Sincerely,
Carol Birks, Chairwoman
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A Few Words from the Honorary Treasurer
Steve Bell, The MND Association of England, Wales and Northern Ireland
I was amazed in Milan at our Annual General Meeting just how much work goes into the role of Treasurer. Carol Birks worked tirelessly last year to pull together the finances of the Alliance, together with a robust budget and an excellent monitoring system for reporting against our income and expenditure.
With Carol’s appointment now as Chair of the International Alliance, I look forward to taking on the role of Treasurer and continuing to offer the same level of support afforded to it by Carol. Thank you, Carol, for your previous hard work!
The Board of Directors will be working during 2014 to find ways to secure growth in membership and opportunities for raising further funds for the Alliance. Already in Milan with the use of our #ShoutLoud campaign, we raised around £1000. We will build on this during 2014.
I look forward to working with you all to sustain the financial future of the International Alliance.
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Summary of the 24th Annual Symposium on ALS/MND
Paula McGrath, The MND Association of England, Wales and Northern Ireland
The Motor Neurone Disease Association’s 24th International Symposium, held in Milan in December, has been heralded the most successful to date – underlining the growing global interest in MND research and care.
Over 950 people from 34 countries registered to hear the latest findings from leading scientific and clinical experts, delivered via a wide range of presentations, satellite meetings and discussion groups. A number of presentations from up-and-coming young researchers, several funded by the MND Association, displayed not only the scope of new research being carried out, but the strength of the ‘next generation’ of scientists and clinicians joining the MND field.
Brian Dickie, the MND Association’s Director of Research Development said: “The coming together of research and care professionals from around the world is crucial for sharing knowledge, skills and expertise. It is by working together that we can, as a global body, work towards improving the lives of those with MND.
“I was particularly impressed by the number of new faces coming in to the field... They are bringing lots of new energy and new ideas. It is reassuring to know the future of MND research is in safe hands.”
The Symposium also offered a platform for delegates to discuss their work face-to-face. This type of global networking is crucial in taking steps forward in MND research and care.
This was the first Symposium for the MND Association’s Chief Executive, Sally Light, who joined the organisation in December 2012. She said: “As I stood on the stage on the final day thanking everyone involved, I was looking out on a sea of faces. I was struck by the cumulative brain power of so many experts in their fields, both established and up-and-coming, all sharing ideas, and how the rate of understanding of this terrible disease is increasing so rapidly...
“There is something about MND and the people who live with it that sucks you in and steals your heart. Once you join this fight, it's hard to leave it, and many at the Symposium had already spent decades of their lives dedicated to this cause. That level of established commitment, along with some of the brightest young researchers from around the world, can only be a good sign for the future.”
To learn more, read our Symposium reports and Sally's blog. The 2014 Symposium will be held in Brussels, from 5-7 December. Find out more on our website.
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Reminder: Expressions of Interest to Host Future Meetings
This is a reminder that the Alliance invites its members to submit an Expression of Interest if they are interested in hosting the ALS/MND Meetings in the future. We have recently sent a detailed bulletin about the new process for applying. If you need more information, do not hesitate to contact the Alliance Coordinator! The deadline is 28 February.
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The 2014 Nordic ALS/MND Meeting:
Save the Date!
Gudjon Sigurdsson, MND Association of Iceland & Jens Spanfelt, Muskelsvindfonden
Following the success of the 2013 Nordic ALS/MND Meeting, our member associations in Iceland and Denmark will hold the 2014 Nordic ALS/MND Meeting on 29-30 August 2014 in Reykjavik, Iceland. Advocacy and support associations, healthcare professionals and people living with ALS/MND from all over the Nordic region will participate.
View the Save the Date announcement here!
The Alliance is proud to celebrate the partnerships growing among its members. Together, we're united in the worldwide fight against ALS/MND!
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Member Update: Christmas Concert at the Taipei ALS Care Center
Yi-ting Chou, The Taiwan MND Association
On 21 December 2013, violinist Shien-ta Su led a team of musicians to perform a world-class concert at the ALS Care Center in Taipei, Taiwan. It was the fourth time that Su played music for people with ALS at the care center. On such a cold and rainy day, the show was like sunshine, warming and comforting many hearts.
Su said that he was deeply touched by the story of Yi-wen Peng, who was a famous pianist before being diagnosed with ALS. Soon after Peng moved to the care center with a tracheostomy in 2012, she donated her piano. Since then, music never stops. The Taiwan MND Association invites musicians to perform at least one show each month.
Su teaches at the Taipei National University of the Arts. He is committed to giving performance at least twice a year and wants to be a supportive volunteer to people with ALS.
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Member Update:
The ALS Association of Argentina
Pablo Aquino and Dario Ryba, ELA Argentina
The ALS Association of Argentina (ELA Argentina) has been extremely active in sharing news, updates and photos through their website and social media outlets.
The Alliance is proud to recognize the Association's many achievements for people with ALS in Argentina, including the success of their recent campaign Eyes That Speak, which helped provide communication devices for people with ALS; their moving visits to ALS patients on Christmas Eve; and their constant commitment to raising awareness through the video campaign "La ELA Existe (ALS Exists)", featuring well-known cultural figures from across Argentina.
We hope you'll keep up with the many activities of one of our newest members through their English news page!
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The Turkey ALS Consortium
Dr. Alper Kaya, ALS-MNH Dernegi
The ALS Consortium of Turkey (ALSCOT) is an independent, nonprofit, ALS oriented medical partnership established by members who allocated their rights and responsibilities to work related to their field of expertise.
In Turkey, a statistical study of the frequency of ALS in the community, the number of patients, their living conditions and quality of life has not been undertaken. One of the aims of ALS Consortium is to collect information about ALS disease.
The ALS Consortium of Turkey was established in 2011 through the cooperation of ALS-MNH Dernegi (The Turkey ALS/MND Association) and the Boğaziçi University Molecular Biology and Genetics Department NDAL laboratory. In 2012, the National ALS Database Project was initiated.
The ALSCOT website has been established to gather information about ALS as a disease and patients' quality of life in order to understand their needs. Turkish patients who have been diagnosed with ALS can log in to to our website, create a new account and register themselves.
The Alliance celebrates the hard work of our members to establish resources and collect data in their home regions!
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Welcome Our New Directors!
We're pleased to announce that two new Directors were elected at the 2013 Annual General Meeting in Milan and have now joined our Board of Directors. Learn more about our new Directors below or check out our Board of Directors webpage for more information!
Lindee David, ALS Canada
Lindee David is the CEO of ALS Canada. In that role, she has led a transformational change to meet the growing care needs of persons living with ALS, instituted an innovative research program, and advocated for changes in government policies, all while moving the organisation to financial sustainability. Lindee has represented ALS Canada as an Alliance delegate since 2011. She is interested in working to build and support new and emerging ALS/MND associations and developing the Alliance’s international image and activities.
Sara Feldman, The ALS Hope Foundation
Sara Feldman has been the Physical Therapist at the MDA/ALS Center of Hope since 1994 and received her Doctorate in PT in 2012. She is the evaluator and study coordinator for several clinical trials and the Assistive Technology Professional for the Center. She has represented the ALS Hope Foundation at the Alliance Meetings and in partnerships since 2007.
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A Message from the Coordinator
Rachel Patterson, Alliance Coordinator
I was honoured to be a part of the 2013 ALS/MND Meetings, and I was blown away hearing about our members' many programmes and activities on behalf of people with ALS/MND worldwide. These events make me proud to represent the Alliance and inspire me to continue doing everything I can to make a difference in the international ALS/MND community.
I want to thank all who participated in our 2013 Meetings and made them so remarkable. I also want to express special gratitude to those who joined us in the #ShoutLoud campaign to raise funds for the Alliance and increase global awareness. We raised over £1000 and reached thousands of people around the world through social media during the Meetings!
I truly encourage those who were not able to attend the 2013 Meetings in person to take advantage of the archived presentations and resources I've uploaded to the website. You'll also find an electronic copy of our 2013 Alliance group photo that you are welcome to download; for a larger version, just email me!
We've recently updated our website, and I hope you have taken the time to visit and see our progress. I encourage each of our members to double-check their entry in the Directory and to contact me if you'd like to make updates. I also invite you to share other content for the website, whether you have a link to add to our list of online resources, want to contribute a partnership success story or have another idea. I am now our webmaster and will make sure everything stays up-to-date!
I've also been busy on our social media sites, Facebook and Twitter, sharing news, updates and awareness, so I hope you are following along! You may know that we now have a YouTube channel as well, which we use to share meeting content and other relevant Alliance videos. I've even set up an Everyday Hero page to encourage donations to support the work of the Alliance.
As Carol mentioned in her message, I am pleased to let you know that I plan to continue in my role as Coordinator for the coming year. I am deeply committed to this cause, and I will continue to do everything I can to grow the Alliance and to serve our members in their support of people with ALS/MND around the globe.
As always, please get in touch with me if there is anything I can do to work more closely with you as a member of the Alliance!
Happy New Year! I am looking forward to all of the exciting collaborative projects we will undertake together in 2014.
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'Nothing is Impossible': Awareness Campaign
Gudjon Sigurdsson, MND Association of Iceland
Our member the MND Association of Iceland has created this awareness video featuring Gudjon Sigurdsson, the President of the organisation, who is a person living with ALS/MND. This short video is an adaptation of the longer version you can view here, detailing Gudjon's inspirational journey.
MND Iceland invites other members of the Alliance to use and share these videos for the purposes of global awareness!
The video currently uses English to reach a wide audience. However, the filmmaker can insert text from any language. If you would like to adapt the video for your audience, please get in touch with Gudjon. For more information, contact the Alliance Coordinator to get connected!
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Member Update:
The Les Turner ALS Foundation
Wendy Abrams, Les Turner ALS
The Les Turner ALS Foundation is thrilled with its successful past year. It has been a year of new goals, new ventures and new achievements for the Foundation.
The Foundation broke two impressive personal records in 2013. The 12th Annual ALS Walk for Life broke its all-time fundraising record and raised over $913,000 while the Run for ALS program, in its third year, brought in over $247,000, making it the highest grossing year for the program yet.
The Foundation has expanded its fundraising efforts to more creative opportunities by applying to local high schools’ fundraising programs. Highland Park High School, a local school near the Foundation’s offices, has selected the Les Turner ALS Foundation as its beneficiary for its 20th Anniversary Charity Drive in February.
The school’s Charity Drive is a month long series of student-run events. Students and faculty participate in fundraising events such as bake sales, talent competitions, charity athletic games and silent auctions and also assemble local businesses and community organisations to host fundraising events, donate and support the students’ activities throughout the month. The high school typically raises more than $160,000 for the selected local charity.
This partnership offers a unique occasion for the Foundation to spread awareness and educate over 2,000 students and their families about ALS, encourage community involvement and gain more awareness for the Foundation and the services it provides.
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Member Update: The Turkey ALS/MND Association
Dr. Alper Kaya, ALS-MNH Dernegi
The Turkey ALS/MND Association (ALS-MNH Dernegi), a member of the International Alliance, has recently organized a Patient Survey on ALS Disease and Environmental Factors, the first of its kind in the region. The survey results will help us to understand the factors that affect the onset and progression of ALS in Turkey (location/city, climatic conditions, symptoms, year disease started, birthplace, gender, age). This will be the basis of the first epidemiologic study that will be done in Turkey.
To view the survey, please click here; the resource is currently in Turkish so only available to Turkish patients. Please do not hesitate to contact us at bilgi@als.org.tr if you have questions.
The Turkey ALS/MND Association is also undertaking another exciting project in cooperation with a venture-based software and technology company. The Smart Glasses Project (pictured above) offers ALS patients a cost-effective and practical technology which has been been developed to provide communication and environmental control.
Through a survey, the Turkey ALS/MND Association is collecting data from patients on issues such as their daily needs and priorities, disease progress, and more. Again, this is currently available only in Turkish.
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