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INFORMATION UPDATE
October 2014 | Issue 39
A Message from the Chairwoman
Carol Birks, MND Australia
Dear Members and Friends of the Alliance,
In July, I visited the USA to spend time with Rachel and to meet with some key members and ALS organisations. We met with The ALS Association, The Muscular Dystrophy Association, The ALS Hope Foundation, ALS TDI, the Biogen Idec ALS iHub team, Patients Like Me and the ALS/MND clinical team at the Massachusetts General Hospital. I would like to thank everyone we met for making us feel so welcome and for the wonderful opportunity to learn, share and discuss the future of the Alliance.
On my return, like many of you, I was taken by surprise by the force and impact of the Ice Bucket Challenge! The IBC has very publically demonstrated the passion and commitment of our community. ALS/MND captured media and celebrity attention after a friend of Pete Frates, a former Boston College baseball player living with ALS/MND, challenged US sportsmen and women and others via social media in late July. When diagnosed in 2012, Frates was determined to make his fight matter! In less than a month, the Ice Bucket Challenge became an unprecedented social media success, raising millions of dollars for ALS/MND research and care worldwide.
The IBC started its global journey on 10th August when Rachel challenged Alliance members in Australia, the UK and Argentina. It has been amazing to witness the progression of the challenge as ALS/MND organisations quickly got on board and fuelled this social media phenomenon. The initial celebrity, sporting and media focus ‘lit the fire’ and helped spread the challenge to the wider community including researchers, neurologists, politicians, diplomats, clubs, pubs, social groups, health and social care professionals, schools and universities.
But it was the involvement of the people living with ALS/MND and those impacted now and in the past that has made all the difference. These personal stories and film clips have helped people who had never heard of ALS/MND before understand just how devastating it is for the person diagnosed, their family and their friends. These images drew attention to the urgent need to fund and promote ALS/MND research and care.
The courage, humour, passion and gratitude of people living with MND has moved and motivated millions of people to get involved worldwide. For the first time people living with ALS/MND have had a voice and the spotlight has been on this disease worldwide. As one tweeter commented: “Finally MND is getting recognized. When I spoke about it nobody had heard about it. Now because of the ice challenge people know.”
I would like to thank the APF and Alliance Meeting Program Committees for putting together excellent programs this year. Please remember to register for these meetings, I look forward to sharing and discussing your Ice Bucket Challenge experiences (and much more!) at the meeting in Brussels.
Sincerely,
Carol Birks, Chairwoman
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A Message from the Coordinator
Rachel Patterson, Alliance Coordinator
The last few months have been a busy time here at the International Alliance, and throughout the global ALS/MND community.
Of course, like everyone else, I have been blown away by the power of the Ice Bucket Challenge. I'm proud to have been a part of taking the challenge outside the USA, helping to raise funds, awareness and visibility for our cause worldwide!
I have also, of course, been busy preparing for the 2014 ALS/MND Meetings in Brussels, Belgium. For this year's Annual Alliance Meeting, we received a record number of abstracts, and we are so excited about the agenda we are putting together. Meanwhile, the program for the Allied Professionals Forum has now been finalized, and you can view it on our website.
I've also been hard at work collaborating with my friends and colleagues at the MND Association of England, Wales and Northern Ireland as we plan meeting sites for 2015, 2016, 2017 and beyond!
This month (October) marks my 2-year work anniversary. I have been honored to serve the Alliance over these last 24 months and excited to see us grow and reach new milestones. Thank you for doing your part to support the Alliance, and I am committed to continuing my work in this community!
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Become a Friend! Support the Annual Alliance Meeting
This year, we have introduced a new level of sponsorship reserved especially for individuals, families and small organisations. This is a way for our friends to show their support!
Become a friend of our Annual Alliance Meeting, to be held on 2-3 December at the THON Hotel EU in Brussels, Belgium.
By donating £120 (or about $200 USD), you'll help us fund the expenses of organizing and running the Annual Alliance Meeting. In return, we'll list your name or a brief message on our program agenda, acknowledging your support.
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Member Update: MND Australia - Four Core Activities
Rachel Rizk, Communications and Information Manager, MND Australia
Advocacy: Global Day Morning Tea at Parliament House, 26 June
To close the ALS/MND Global Day campaign, MND Australia and the state MND associations provided an update on MND research and presented to federal parliamentarians the names of 2029 people who signed the five rights of people living with MND petition.
Raising Awareness: The Ice Bucket Challenge, 10 August - Present
Here’s how the Ice Bucket Challenge unfolded in Australia (click to enlarge). Thanks to Rachel Patterson for calling out CEO of MND Victoria Rod Harris, who became the first Australian to complete the Ice Bucket Challenge.
Funding MND Research: Record Number of Proposals Received, 29 August
The MND Research Institute of Australia (MNDRIA) has received a record 92 proposals for funding for new MND research projects commencing in 2015.
Every research project that is funded by MNDRIA has been scrutinised and endorsed by the MND Australia Research Committee to ensure that supporters’ donations fund only the best research.
Providing Trusted Information: 7th National MND Conference (including Ice Bucket Challenge), 8 September
170 delegates converged on the Gold Coast for the 7th National MND Conference. The full-day program was packed with presentations from Australian and UK speakers that addressed the Conference theme – "Together! Participation, Partnerships, Progress." Click here to view the conference program and watch videos of the presentations.
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Member Update: The MND Association - Awareness Month, June 2014
Steven Bell, Director of Care, the MND Association of England, Wales and Northern Ireland
The theme for the MND Association’s awareness raising during June 2014 this year was “ Voice” – with awareness focussing on the loss of voice during progression of the disease and the need to ensure that all people living with ALS/MND can maintain as much independence and dignity as possible.
We developed a series of large posters. 665 were displayed in total across England, Wales and Northern Ireland, from the underground in London, to railway stations in the north of the country. The Town Hall in Belfast was lit in MND Association colours on Global Awareness Day.
Charlie (above), who is 29 and has MND, became one of our “faces” of awareness month.
So, what were some of the outcomes?
- We reached over 10 million people through use of social media
- A record number of enquiries to hold “Bake It” cake sales for MND
- We reached 20,000 MND Charter signatures
- Media coverage included the national press and magazines
- We attracted 1,200 new Facebook “likes”
- We attracted 985 new Twitter followers
- We achieved 5,300 Twitter mentions, compared to 2,900 in May 2014
- We achieved 4,100 retweets during June 2014 (from a monthly average of 1,400)
So, a very successful awareness raising month. The MND Association will be continuing with this theme as we develop our manifesto for our forthcoming Government General Election in 2015. |
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Member Update: Taiwan MNDA - A Wonderful Experience in Iceland
Kiki Qu, Taiwan MND Association
From 29 to 30 August 2014, Yun-Ju Lin, Secretary General of the Taiwan MND Association, and Kiki Qu attended the 10th Annual Nordic ALS Conference in Reykjavik, Iceland.
Thanks to arrangements made by the Chair of the MND Association of Iceland, Gudjon Sigurdsson, we visited the Departments of Neurology and Physiology at the Landspitali University Hospital (LUH), the Ministry of Welfare and the Parliament of Iceland before the meeting.
The two-day Nordic ALS Conference was high-caliber with 20 local and international speakers from a wide spectrum of professions and backgrounds. Kiki Qu shared her husband Tom's story of living with ALS and their decision to choose a tracheotomy, and got a lot of positive feedback.
The meeting created a very cozy and warm atmosphere, facilitating attendees to have close and deep conversations. So we reaped a lot of information, ideas and priceless friendship!
Click here for video from the 2014 Nordic ALS Conference.
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Member Update:
MND Iceland
Gudjon Sigurdsson, Chairman, the MND Association of Iceland
The last months have been very busy for all of us up here in Iceland. We have been successful in the #IceBuketChallange and recived donations for our work. As you all know, the amounts we have raised worldwide are great, but to build a med from scratch to a pill costs something like $2 billion USD. So, hopefully, we can use this attention and good will to do something big and real and once and for all get rid of this damn thing called ALS/MND.
The Reykjavik Marathon took place on the 24th of August, and we did well in collecting money for our runners. As you know, to get donations for the runners is lot of work and just to register as a runner for the MND Association of Iceland is half the battle. Then you have to start bothering people for donations in your name. You become the most annoying person around for weeks, but for a good cause.
The 10th Annual Nordic ALS Conference was a success in every way. Good program, good media covrage and good guests. The webcast is available on our webpage. You can also watch video from the conference here.
A volcano started to erupt during our meeting, so you can imagine the power we are able to do, united in the fight for world free of ALS/MND!
Hope to meet you all in Brussels for a great meeting over there.
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Now Accepting Nominations: Board of Directors
Rachel Patterson, Alliance Coordinator
This is a reminder that we are still accepting nominations for 4 open positions on the International Alliance's Board of Directors.
Any delegate from a Full Member association is eligible to be nominated.
Please submit nominations no later than 24 October, 2014.
We will vote to elect our new Directors at the Annual General Meeting of the Alliance on 2 December, 2014.
Please send completed nominations to coordinator@als-mnd.org.
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Member Update: MND Scotland's Personal Care Charging Campaign
Susan Webster, Head of Policy and Campaigns, MND Scotland
In June, MND Scotland launched a campaign highlighting a personal care charging ‘postcode lottery’ for people with MND in Scotland. Personal care is provided at home by local authorities for people who need help with washing, feeding, toileting, getting in and out of bed. People under 65 years who receive support are financially assessed and often charged. Local authority guidance says terminally ill people should not be charged. However, while some local authorities waive charges others only ‘allow for discretion’.
Our campaign calls for:
- Local authorities to stop charging terminally ill people for personal care.
- Local authority guidance to state that a government form or doctor’s letter should be accepted as evidence of terminal illness.
- The Scottish Government to endorse this and consider updating legislation.
The campaign was immediately picked up by the media and has already achieved significant success:
- The Scottish Government promptly responded, stating that, if local authorities did not stop charging terminally ill people, new laws would be introduced.
- The strictest local authority has made a high profile u-turn and is no longer charging terminally ill people.
- Local authority leaders have agreed the guidance should be updated as proposed by our campaign.
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Member Update:
The ALS Association of Argentina - Recent Activities
Pablo Aquino, Asociación ELA Argentina
Bahía Blanca City Mayor Declares ELA Argentina's Actions for ALS a Municipal Interest
Mayor Bevilacqua did not pour ice water over himself, but he did pay the fine. The city mayor rejected pouring the ice water over his head and, following the challenge’s rules, he paid with a donation (personal check of 2,000 Argentine pesos) that will be used for research of effective treatments against the disease.
First Steps for the Creation of a Medical Center Exclusively for PALS in Argentina
We were called by Dr. Gabriel Yedlin, Secretary of Policies, Regulation and Institutes of the National Ministry of Health to move forward with this long-awaited dream of ALS patients in our country. This center will be settled at the Hospital de Clinicas and will replicate the model to other hospices in all the national territory.
Campaign Funds Raised Will Be Audited by BDO, One of the Leading Companies in Argentina
We appreciate the supportive contribution of the company represented by Claudio Doller, Partner, ILP, member of BDO’s Executive Board and Nancy Garcia, external audit partner.
The National Government Pledges Support for Two of ALS Argentina's Projects
We agreed with Minister Manzur to create the first exclusive medical care center specialized in ALS. Also, Minister Manzur will financially support the epidemiological study of ALS patients in all the country.
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Member Update:
Activities at ALS Liga Belgie
Dirk De Valck, ALS Liga Belgie
ALS Ice Bucket Challenge in Belgium
In the second half of August, the ALS Ice Bucket Challenge conquered Belgium. Our CEO Evy Reviers was challenged by Dario Ryba of the Asociaciόn ELA Argentina / ALS Association Argentina. Evy's video attracted media attention and started a tremendous chain reaction of challenges within the ‘Famous Belgians’ community and the general public. As an example, the Flemish Minister of Healthcare, Jo Vandeurzen, and the Minister of Science & Innovation, Philippe Muyters, and even King Filip I of Belgium accepted the ALS Ice Bucket Challenge!
The action was broadly covered by the Belgian audiovisual and written press, giving ALS and ALS Liga Belgium a lot of media exposure. We are happy that the Belgian contribution to this international initiative for ALS awareness-building and fundraising was so successful.
ALS - Contact Moment
From 5-7 September, ALS Liga Belgium organised its annual ALS – Contact Moment for pALS, their families, friends and personal assistants in holiday with care residence Middelpunt on the Belgian coast.
The weekend offered a well-balanced program for the 40 pALS that attended the weekend: The latest information on ALS care and scientific progress was provided. A panel discussion on ‘bringing experimental medicines faster to pALS’ was held with representatives of the pharma industry, medical doctors and policy makers, with interaction of the pALS. Of course, ample time was taken for informal interaction between the participants, and for relaxing therapies.
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Member Update: The ALS-Helper App, Developed by ALS-Vereinigung.ch
Thomas Stucki, ALS-Vereinigung.ch (The Swiss ALS Association)
Dübendorf, 6th June 2014 – Patients who are suffering from the ultimately fatal and incurable disease Amyotrophic Lateral Sclerosis (ALS/MND) frequently have to depend on support tools to be able to communicate. The disease has the potential to cause the paralysis of the patients’ extremities soon after they have been diagnosed. Another possibility is that the illness will make it impossible for them to talk.
A newly-developed app, available under the name “ALS-Helper,” now enables those affected by the disease to assess their needs directly in a highly expeditious manner and to communicate clearly what needs to be done. Although the ALS-Helper is not a language software, it is an excellent tool for every individual whose communicative options are limited.
- Available in the iTunes Store (Android version is still under development). Original release date April 4, 2014, Version 1.0, file size 17.9 MB.
- Languages: German, English, French, Italian, Spanish (other languages are in the works). Customized categories; can be expanded at any time.
- Provides visualized pain location and information on pain intensity.
- It is possible to archive instruction videos and all caregiver instruction documents. Suitable for all patients who have limited vocal expression capabilities.
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Member Update: Camp HLC
Jodi O'Donnell Ames, Hope Loves Company
Hark and HLC are happy to announce another camp experience! The latest Camp HLC will take place at Frost Valley YMCA in Claryville, NY, from October 17th - 19th.
Camp is free to the children and grandchildren of ALS patients. The weekend takes place in the beautiful Catskills of NY and is an opportunity for children and young adults to unite and have fun, be challenged on the camp's enormous,grounds and share their experiences with others who understand.Please go to Frost Valley's website to read about their amazing camp which attracts campers from all over the US.
Please reach out if you are interested and we will share additional details. Registration for each camp session appears on the HLC website.
To learn more about Hark and their wonderful mission, please go to www.hark-als.org.
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