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A Message from the Chairwoman
Carol Birks, MND Australia
The year is well under way for the Alliance thanks to our hard-working Board and staff!
It is shaping up to be a busy year once again. Rachel Patterson, our General Manager, has already undertaken a site visit to Boston and attended a number of key meetings on our behalf. The APF Call for Abstracts has been distributed, and registrations for the APF and Symposium are now open. The 2017 Operational Plan has also recently been distributed to members. I hope that you have had a chance to have a look and will consider getting involved in assisting with delivering the outcomes for 2017!
The next big date in the ALS/MND calendar is Global Day on 21 June. Rachel Patterson and Rachel Blanton are working on a great idea with Directors Gorrit-Jan and Rob Goldstein. Read more in Rachel Patterson's message below, or visit our 2017 campaign webpage. Stay tuned for updates and please be sure to get involved in helping to raise awareness globally.
Rachel Patterson and I are looking forward to our mid-year supervision and member engagement visits. This year we will be visiting members in Croatia and Bosnia and Herzegovina on our way to attending ENCALS meeting in Slovenia. The ENCALS meeting will offer the opportunity to promote the Alliance to the ALS/MND community in this region and to catch up with a number of existing Alliance members. We will conclude our trip with a visit to the MND Association.
Membership continues to grow and I thank all those members taking an active role in partnerships, mentoring and sharing of resources. Many of these partnerships happen organically following the Alliance meeting and driven by individuals and member associations. Partnerships can also be supported financially through the Alliance Support Grant Program. To date this year two ASG’s have been awarded to support members in Russia and Rwanda.
We look forward to your continued 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
As always, it has been a busy quarter here at the Alliance!
Since January, I have made several trips to liaise with members and help us meet our operational goals. In February, I had the privilege of attending a professional development workshop hosted by our friends at The ALS Association in Irvine, California. While at this leadership conference, I attended workshops on good governance, talent management, marketing, communications, public relations and organizational ethics. I want to thank Barbara Newhouse and The ALS Association team for inviting me to this event. While my schedule is always hectic as I work to set the Alliance's operational goals and help our staff to meet these goals, I recognize the importance of pursuing professional development opportunities that help me to reflect on my role and be the best manager I can be.
In April, my busy travel schedule continued with a visit to our 2017 meeting site to Boston, joined by the MND Association's Conference Team, our colleagues at ASETS and representatives from this year's co-hosts, ALS Therapy Development Institute and the ALS Hope Foundation. Plans continue on schedule as we prepare for this year's ALS/MND Meetings. Learn more here! Registration is now open for the Allied Professionals Forum (APF) and Symposium, while Alliance Meeting registration will open in June. In the meantime, we are accepting abstracts from clinical professionals for the APF through 5 May using the abstract submission form - spread the word!
Most excitingly, we are now gearing up for Global ALS/MND Day, 21 June 2017. The Alliance will be promoting a special campaign this year called The ALS/MND Cheers Challenge. On Global Day, we will say "cheers" to celebrate our friendships and show appreciation for our companions and colleagues in the global fight against ALS/MND. Get ready to make your own special toast on 21 June with a photo and message. Learn more here and watch out for email instructions coming soon! Special thanks to Rachel Blanton and our Board members Gorrit-Jan Blonk and Rob Goldstein for helping to develop and execute this campaign plan.
I am looking forward to another Global Day raising awareness for our international community!
Best wishes,
Rachel Patterson, General Manager
A Few Words from the Honorary Treasurer
Steven Bell, The MND Association of England, Wales and Northern Ireland
The finances of the Alliance continue to be healthy, thanks to an increase this year in subscription income, with £79,554 received against an expected budget of £63,948.
Equally, thanks to sponsorship in Dublin, we were able to make a very small surplus from the APF and Alliance Meeting, despite the fluctuation in the exchange rate between the £ sterling and the Euro.
The biggest challenge for the rest of 2017 is trying to minimise the costs that are predicted for Boston 2017. We are actively seeking to increase our sponsorship so that we can keep the meeting fees as low as possible, without the need for large increases, and whilst some increase will be inevitable due to the North American venue, we need to minimise these.
So another reminder – we do have allocated funds in our accounts to consider for the award of Alliance Support Grants for meeting travel and to support partnerships and mentorships. Rachel is currently working on a mentoring model to look at how we can support developing associations. Please continue to think how you might be able to be involved.
Welcome Our New Members!
ALS Patients Connected (Netherlands)
Ruud Koljin, ALS Patients Connected
ALS Patients Connected (APC) was founded in 2014 in the Netherlands by the dedicated effort of two people living with ALS. APC’s main objective is to be the voice of people suffering from ALS. APC aims to maximise the impact of ALS-patients on quality, financing and shortening of the lead time of promising research and trials to prevent/stop the disease or to slow down the progression of symptoms and to optimize the quality of life of patients. APC is an independent non-profit association with ALS (and PLS and PSMA) patients in control and managed by ALS-patients, their relatives and representatives. APC supports the collective interests of ALS-patients with a focus on research and innovative or experimental treatments and trials.
APC also aims to optimize resources and services for ALS patients, increase public awareness of ALS and share knowledge and experience on ALS. APC works closely together with the ALS foundation who coordinates fund raising and support and the ALS Center, the center of compentence for trials, diagnosis and research.
Associação Brasileira Lutando Contra ELA – ABLE (Brazil)
Sthanley Abdão, Founder, ABLE
I am Sthanley, I’m from Brasília, Brazil; I’m a patient with a motor neuron disease with symptoms diagnosed in November 2011. I am also the founder of the Brazilian Association Fighting Against ALS (Associação Brasileira Lutando Contra ELA – ABLE), that aims to help patients in Brasilia and other Brazilian states with information and supports, such as: the respiratory conditions evaluation done by a volunteer expert from ABLE, PT PHD; acquisition of the noninvasive ventilator for noninvasive ventilation (Bilevel Positive Airway Pressure - BIPAP); and the indication of health professionals.
As a scientific basis we understand that the patient with MND/ALS, correctly supported by a transdisciplinary team, such as, respiratory, nutritional and rehabilitation therapy is favorable for life quality and survival rate increase. These measurements are much superior compared to the ones for other patients who do not have this help for many reasons.
We are the first Brazilian institution that began with and is led by a patient member of the Alliance.
Accepting Abstracts for the Allied Professionals Forum
Share a Video!: The Turkish ALS/MND Association Turns 15
Dr. Alper Kaya, ALS-MNH Dernegi
This year the 63rd Gillette-Sportsman of the Year Award ceremony was held with a magnificent ceremony at the Zorlu Performance Arts Center, İstanbul. The message of former Trabzonspor Club football player Ismail Gökçek, who has been fighting ALS for 18 years, was heart warming. Ismail Gökçek, who was retired from football in 1999 after receiving an ALS diagnosis, was honored with a special award by the jury for his efforts on behalf of the ALS-MNH Association and for the 8,000 PALS living in Turkey. He took this precious award with standing applause.
We will be celebrating our 15th year as an association on 9th of May. This time the Turkish football Federation will host the dinner. It would be great to see you in Istanbul!
It would also be nice to watch short video messages from all over the ALS/MND global community. We can screen these messages during the dinner. If you would like to submit a video to be viewed, please contact Dr. Alper Kaya: alper.kaya@gmail.com.
Member Update: ALS Pro-Cura Association
Jorge Abdallo, President, ALS Pro-Cura Associacion
The Amyotrophic Lateral Sclerosis in 2017: Dublin 27th International Symposium Update event took place in the Hospital do Coração in São Paulo, Brazil. All the speakers at this event attended the Annual Meetings in Dublin. Respiratory therapist Alessandra Dorça, Technical Director of ALS Pro-Cura Association, presented the news and discussions that took place at the Annual Meetings, after which discussions on scientific and technical content commenced. Speech and Language Pathologist Adriana Leico Oda talked about new ideas involving speech and swallow functions, advances in communication technologies, and the news presented in the sessions, posters and oral presentations on these topics at the Annual Meetings.
The topic of respiratory care was then presented, emphasizing the precocity of non-invasive ventilation by the Physiotherapist Alessandra Dorça. After lunch, important topics such as nutrition and gastrostomy recommendations were discussed with nutritionist Cristina Salvioni. Finishing the cycle of presentations, neurologist Dr. Marco Antônio Chieia presented all the news about current research and medicine.
The event was a success and attended by professionals, patients and caregivers from across Brazil. In addition to providing useful knowledge, exchange of information and networking, the event also raised funding for the association and generous sponsor support helped in the cost of the meeting.
Our mission to help people living with ALS/MND was strengthened and brilliantly presented by the President of the ALS Pro-Cura Association Jorge Abdalla and his wife Christina Abdalla. Thank you for your efforts to meet the goal of being strong in the fight against ALS!
Member Update: Gala of Hope - ALS Hope Foundation
Mara Nissley, Communications and Events Manager, ALS Hope Foundation
Dr. Terry Heiman-Patterson opened the evening by thanking MT Pharma for their generous sponsorship of the Gala as well as thanking Robert Rosti and Jean Hubble for attending the event on their behalf. She extended a warm thanks to Temple Health for their new support of the MDA/ALS Center of Hope and the ALS laboratory. She stressed the importance of collaboration and teamwork in fighting ALS and finding a cure for this terrible disease.
She also introduced our 2016 Season of Hope ambassador, Dr. Jeffrey Kramer, to speak about his experience with ALS. The speech was marked by Dr. Kramer's quiet strength and dignity in dealing with the disease. It took a great deal of courage to speak about such sensitive issues in front of a room full of people.
Remarks from Dr. Ausim Azizi, Professor and Chair of the Department of Neurology at Temple University Hospital and Marissa Lozano, Associate Director of Family Support and Clinical Care from the Muscular Dystrophy Association followed. Collaboration and teamwork were the predominant themes; we appreciate their partnership and thank them for their generosity and dedication.
The Gala raised almost $50,000 for ALS research and care. We cannot thank our guests enough for making an effort to attend this year's Gala. It gives us strength to know we have such passionate and thoughtful individuals supporting our PALS and ALS Hope Foundation. Together, we are keeping Hope on the Horizon!
Members: Share Useful Links on the Alliance Website!
Rachel Patterson, General Manager
We are currently undertaking an update of the Alliance's "Useful Links" page. View the current page here.
Specifically, we are seeking ALS/MND care information and guides from our members. If your association has a "What is ALS/MND?" page, or if you publish care guides for people with ALS/MND and their families, please send these links to us!
We would like to collect these links in as many languages as possible so that visitors to our website (who come from all parts of the world) can use them as a resource.
Scottish MND patient and campaigner, Gordon Aikman, sadly passed away at the age of 31 after a three year battle with Motor Neurone Disease, on 3rd February 2017. Through his Fightback campaign Gordon achieved much over the past three years including:
Raising £550,000 for MND research
Securing the doubling of MND nurses in Scotland, as well as their funding through the National Health Service (NHS) - a move that has transformed care for people with MND in Scotland
Helping secure legislation that guarantees people a right to a voice if they lose theirs - there is now a legal duty in Scotland to provide equipment and support to people who lose their voice through conditions like MND
British Empire Medal in the Queen Birthday Honours List 2015
Honorary Doctorate from the University of Edinburgh
Alongside other campaigners, securing a commitment from the Scottish Government to pay care workers the Living Wage
Writing a monthly column for the Sunday Times entitled The Motor Neurone Diaries
Joint winner of the SCVO Charity Champion award 2016
After his death, the Scottish Government announced it would fund a new £25,000 scholarship to support improvements in MND care in honour of Gordon.
The Gordon Aikman Scholarship will fund individuals and professionals to develop practical improvements in the way people with MND are cared for – such as sharing best practice in specialised physiotherapy or developing a better understanding of carers’ educational and support needs.
Member Update: Wheelchairs Donated from ALS Liga Belgium to Acociación ELA Argentina
Pablo Aquino, Association Secretary, Asociación ELA Argentina
With great pride and emotion, the Asociacion ELA Argentina announces that on February 21st we finally picked up the 10 electric wheelchairs generously donated and shipped by ALS Liga Belgium. The electric wheelchairs were delayed by customs for 3 months. It was a long, expensive and exhausting process fighting against local bureaucracy, but we have finally received them and in turn our PALS will be able to enjoy a better quality of life.
We will organize an event along with local official authorities that will take place between the end of April and beginning of May, to assign the chairs to specific PALS.
We have already received 72 applications for the 10 wheelchairs and will analyze these applications during the next 3-4 weeks. We will then draft a contract of gratuitous bailment to be signed by each patient.
Thank you, ALS Liga Belgium, for this extremely valuable donation and permanent support for our PALS!
Member Update: Dr. Jonathan Glass' Speaking Tour in Argentina
Pablo Aquino, Association Secretary, Asociación ELA Argentina
Asociacion ELA Argentina is very pleased and honoured to anounce that Dr. Jonathan Glass, MD, has accepted our invitation to visit our country during the week of September 10th. Dr. Glass will deliver different talks in the Capital, Buenos Aires, plus two important cities in the countryside, Rosario and Tucuman. He will give us the latest updates on ALS research and therapies.
Among other very impressive achievements, Dr. Glass is the Director of the Emory ALS Center, which has grown to be one of the largest clinical centers in the United States.
In 2016, Asociacion ELA Argentina organized another Speaking Tour with Dr. Lucie Bruijn, Chief Scientist of the ALS Association.
Member Update: New Zealand MND Registry is Ready to Launch
Annabel McAleer, Communications and Engagement Advisor, MND New Zealand
A Registry of people with MND in New Zealand will be officially launched in May, sponsored by MND New Zealand. Funds raised for research by the Walk 2 D’Feet MND in 2015 and 2016 are being used establish and maintain the Registry.
The Registry will connect people with MND to researchers, informing participants if they are a suitable candidate for research studies.
Over time, the MND Registry will facilitate the growth of the MND research field in New Zealand by enabling researchers to find study participants quickly and easily. The MND Registry will also provide valuable information to guide the future development of support services.
It is estimated that 310 people are living with MND at any one time in New Zealand. We hope that a large percentage of people living with MND will choose to enrol with the New Zealand MND Registry. The Registry will collect demographic, contact and clinical information, as well as genetic information if this is known Data will be stored anonymously in a secure online database maintained by the Australian MND Registry.
"In rare diseases every patient counts, and the inclusion of New Zealand is a welcomed and vital addition to the MND registry collaboration led by the Australian MND Registry,” says Associate Professor Paul Talman, Principal Investigator of the Australian MND Registry.
As well as enrolling people with MND, the MND Registry will also enroll people without MND who have a family member with an identified genetic form of MND (including those whose affected family members have had only frontotemporal dementia symptoms, if genetic testing has identified an expansion in the C9orf72 gene).
For more information, see www.mnda.org.nz/registry or contact Kerry Walker, NZ MND Registry Curator.
Alliance Support Grants Are Available to Support Partnership Travel!
Rachel Blanton, Alliance Coordinator
We want to remind all members that they can apply for Alliance Support Grant funding. An important part of the Alliance Support Grant is to fund travel related to members' partnership and mentorship activities. If you are in an active partnership with another member or emerging association, please tell us about your plans and consider applying for funding. More information is available on the Alliance Support Grant page. To access the application, click here. (Only current members are eligible to apply; you will need to log in to the members only site.)
Have you already engaged in a partnership? Please share your success story with us to promote on our website. Get in touch with the Alliance Coordinator to share your story: coordinator@als-mnd.org
Member Update: 2017 ALS Unfiltered Series Kickoff -ALS Therapy Development Institute
Emer Martin, Communications & Development Specialist, ALS TDI
The ALS Therapy Development Institute kicked off their 2017 ALS Unfiltered series with a webinar on the Top Ten Things in ALS to watch for in 2017. This webinar delves into the eventful year ahead for ALS research with Edaravone, the first potential treatment for ALS in 30 years, awaiting FDA approval, and Masitinib and Tirasemtiv, two potential treatments in late stage clinical trials, expected to have results by the end of 2017. A link to the full webinar and others in the series can be found here.
Scientists at ALS TDI published results independently investigating the efficacy of Copper ATSM (CuATSM) in a mouse model of ALS. Groups at Oregon State University and the University of Melbourne have shown efficacy of the compound in various models of ALS and the work from ALS TDI adds additional support for CuATSM moving forward. ALS TDI also issued a brief statement on the recent press release from AB Science regarding top-line results from their phase 2/3 clinical trial of Masitinib in people with ALS.
This year’s BASH for Augie’s Quest had a record breaking year, raising $3.5 million for ALS research! Part of this success was due to incredible nationwide fundraising drive led by Orangetheory Fitness. The #IBurnForALS campaign, took place from February 20 to March 5 during which Orangetheory members raised $2 million!
Member Update: Patient and Family Advisory Council - Les Turner ALS Foundation
Jordyn Landberg, Communications and Marketing Manager, Les Turner ALS Foundation
The Les Turner ALS Foundation is pleased to announce the formation of a Patient and Family Advisory Council. Its mission is to unite people with ALS, their families, caregivers and medical and support professionals to best serve the medical, research and educational needs of those affected by ALS.
The purpose of the Patient and Family Advisory Council is to empower patients and family members to provide direct input regarding care issues and community related programming to the Les Turner ALS Foundation in an effort to improve the care and services the Foundation provides. It also gives the Foundation the ability to hear the needs and wants of people living with ALS and their family members.
It is our hope that through the involvement of people who have been directly affected by the disease, we can build and strengthen the programming offered by the Foundation to ensure we are best serving those who utilize our services both today and in the future.
Currently, the council is comprised of six spouses of people with ALS who have passed away, two people currently living with ALS, one caregiver and two Foundation representatives, the Director of Patient Services and the Vice President of Medical Services. At the first meeting in early March, council members discussed their desire to give back to other families going through similar journeys. Specific initiatives included legislative ALS advocacy issues and how to best make their voices heard by Congress while encouraging others to do the same.
Member Update: United to Advocate for People with Neurological Disease - MND Australia
Rachel Rizk, Communications and Information Manager, MND Australia
In Australia, major changes are underway in the provision of support for people with disability, their families and carers. A new system called the National Disability Insurance Scheme (NDIS) is being rolled out nationally. It has the potential to transform the lives of people under 65 who are living with progressive neurological disease; however, to date many people are receiving insufficient support that is adversely affecting their quality of life.
MND Australia is one of 10 members of the Neurological Alliance Australia (NAA) who are united to advocate for the needs and rights of more than 850,000 people living with neurological disease in Australia. A joint position paper was launched by NAA at Parliament House, Canberra to call for equitable and effective support within the NDIS for people with progressive neurodegenerative diseases and increased investment in research.
During the launch, Chairman of the MND Research Institute of Australia Research Committee, Professor Matthew Kiernan presented on the urgent need for increased investment in research. Following the personal accounts from three people who are living with a progressive neurological disease, NAA Chair, Deidre Mackechnie presented the joint paper to Senator Deborah O’Neill and outlined the NAA recommendations to ensure the best outcomes for people with progressive neurodegenerative diseases within the NDIS.
By uniting with organisations that share similar goals, MND Australia is able to amplify its lobbying efforts and more effectively influence policy. The launch of the joint position paper caught the attention of the media (see TV coverage) and resulted in the Twitter hashtag #NAAaction trending in Australia.
Member Update: Taking Care of a Person Living with ALS in the Winter - Shaanxi ALS Association
Bingcang Yan, Secretary-General, Shaanxi ALS Association
Bingcang Yan, who is the Secretary-General of the Shaanxi ALS Association, the Vice President of the Xi'an TCM Brain Disease Hospital, and the Chief Physician of Neurology came to the southern suburbs on February 19 to visit lijuan Ma who has ALS. She has gradually found a problem with swallowing, has difficulty speaking, drooling and sweating after mild activity. At present, the main problems include: drooling, eating slowly, frequent bathroom trips, cannot speak and cannot turn her head. We wondered: “what next? What is a scientific and reasonable intervention?”
The Secretary-General first introduced the association including: service scope, service mode, service tenet, etc. Then he introduced the Xi'an TCM Brain Disease Hospital which has the ward, the correct medical care and caring services only for ALS. At the same time, he answered detailed questions about the illness, treatments available and the current progress and direction of diagnosis and treatment in nursing abroad. Yuan He, who is the Language Therapist of the Rehabilitation Department in Xi'an TCM Brain Disease Hospital, did the swallowing disorder assessment and training for the patient. Hongxia Gong, who is the head nurse, gave the patient guidance about oral care, diet management and daily life notes. The family of the patient was very satisfied with the association's care.
Member Update: Going Further Together Towards a World Free from MND - MND Association
Emma Johns, Communications Manager, MND Association of England, Wales and N Ireland
It’s been a busy start to 2017 with the launch of our new five year Strategy. Going further together – towards a world free from MND is an ambitious plan to deliver the best possible care and support for people affected by motor neurone disease.
Our Vision remains the same; a world free from MND. And our three point Mission is to improve care and support, fund and promote research plus campaigning and raising awareness. The strategy document details how we plan to fulfill our mission through a series of interlinked goals and also underlines the way we will work together to achieve them both as an Association and with our partners.
It followed an extensive consultation process with people with MND, our trustees, our volunteers, health and social care professionals, the research community, our members and staff.
Sally Light, Chief Executive of the MND Association said: “Not everything will be achieved in a few months and we are also aware that the external climate could change and we may need to adapt our plans to meet challenges or exploit opportunities. But some things don’t change and we will continue to put people living with MND, their carers and families at the heart of everything we do.”
Member Update: ALS Canada Has a New Website!
Nicole Aarssen, Marketing and Communications Coordinator, ALS Canada
ALS Canada’s website has a new look! ALS.ca has been redesigned for easier, more intuitive use in order to better serve, support, and communicate with our community. The new website is compatible with mobile devices, is available in English and French, and includes a blog to share timely stories and news. Check it out: www.als.ca.
Each year, ALS Canada brings together the Canadian ALS research community for the ALS Canada Research Forum. The event provides an opportunity for researchers to meet, share knowledge and collaborate, and to connect with the broader ALS community including ALS Canada’s clients and donors. This year’s event will take place in Toronto from April 29 – May 1. It will be preceded by a stakeholder workshop in support of our Vision 2024 strategic planning exercise, so named because of our expectation that effective treatments will be a reality by the year 2024 and as defined in our current vision.
As we work on Vision 2024 throughout 2017, we will be seeking input from stakeholders and our community, people living with the disease and their caregivers, consulting with international partners and drawing from the experience of disease-based organizations that serve populations whose life expectancy has increased. This range of perspectives in addition to the review of key data will inform the evolution of our organization to ensure we are poised to respond to the challenges and opportunities that the ALS community will be faced with as we move to ALS being a treatable, not terminal disease.
Occupational Therapy is Celebrating 100 Years as a Profession!
Mark Goren MS OTR/L CHT, MDA/ALS Center of Hope (ALS Hope Foundation)
Occupational Therapists around the world continue to assist both PALS and their caregivers. In recognition of National Occupational Therapy Month, and 100 years of Occupational Therapy service here in the United States, Philadelphia’s MDA/ALS Center of Hope once again highlight our partnership with Thomas Jefferson University’s School of Occupational Therapy. Each year 2 students meet with a client/patient from the MDA/ALS Center of Hope. Rapport between our patients and the occupational therapy students is established over 7 visits lasting approximately 8 weeks. The students get to know their client and gain knowledge about the diagnosis of ALS. In addition, the occupational therapy students use their knowledge to perform an environmental home safety assessment.
With permission from the client, the information gathered is reviewed in a small group setting with the student’s teachers, professors and mentors. Students return each week to collaborate with their client. The goal of the program is to help adapt the client’s environment increasing independence with activities of daily living. This program is voluntary. Any patient who visits with us at the MDA/ALS Center of Hope in Philadelphia can participate.
"Distinguishing the compassionate and intelligent efforts the occupational therapy students from Thomas Jefferson bring into the lives of our patients and their families living with ALS demonstrates once again how occupational therapy can change patient lives for the better," says Mark S. Goren MS OTR/L CHT, Senior Clinical Specialist at the MDA/ALS Center of Hope in Philadelphia.
Member Update: Hope Loves Company Camp May 2017
Jodi O'Donnell Ames, President and Founder, Hope Loves Company
Hope Loves Company will hold a Camp HLC event May 19-21, 2017 at the Fairview Lakes YMCA in Stillwater, NJ. For more information about camp or to register go to www.hopelovescompany.com or email hopelovescompany@gmail.com.
Camp is for children ages 6 to 21.
For the best camp experience, children under the age of 12 must come to camp with an adult family member or adult chaperone.
Camp HLC is a three-day overnight retreat for children and young adults who have or have had a loved one living with ALS. It is an opportunity to have fun, to be challenged through team building exercises and to meet other children who are in the same situation.
Camp is provided free for our ALS families with support from Hope Loves Company and our sponsors. All meals and activities are included.
Member Update: Global Hug Moment - Prize4Life
Yael Preminger, Director of Marketing and Resource Development, Prize4Life
For the past two years, Prize4Life has promoted a unique initiative to mark ALS awareness day - with a hug. Shay Rishoni, ALS patient and Prize4Life's Chairman, is proud to lead this initiative with only his eyes.
The global hug is a hug of solidarity for those who can't hug, but can feel it and need it the most: people living with ALS. A hug is simple, it's free and can only do good.
We invite all ALS organizations and everyone around the world to perform a hug on ALS Global Awareness Day, 21 June. You can join by encouraging people to hug at home with family and friends or at work with colleagues and teammates and by organizing public hugging events in famous, central location.
Please promote and share it on your website and social media. If you are using the rights document as part of a special advocacy campaign in your country, please tell us about it by emailing the Coordinator.
If your logo doesn't appear on the page and you'd like to add your official support to the rights document, please contact the Coordinator.
scientific and technical content commenced. Speech and Language Pathologist Adriana Leico Oda talked about new ideas involving speech and swallow functions, advances in communication technologies, and the news presented in the sessions, posters and oral presentations on these topics at the Annual Meetings. 
news about current research and medicine.
She also introduced our 2016 Season of Hope ambassador, Dr. Jeffrey Kramer, to speak about his 
wheelchairs were delayed by customs for 3 months. It was a long, expensive and exhausting process fighting against local bureaucracy, but we have finally received them and in turn our PALS will be able to enjoy a better quality of life.
It is estimated that 310 people are living with MND at any one time in New Zealand. We hope that a large percentage of people living with MND will choose to enrol with the New Zealand MND Registry. The Registry will collect demographic, contact and clinical information, as well as genetic information if this is known Data will be stored anonymously in a secure online database maintained by the 
the work from ALS TDI adds additional support for CuATSM moving forward. ALS TDI also issued a 
It is our hope that through the involvement of people who have been directly affected by the disease, we can build and strengthen the programming offered by the Foundation to ensure we are best serving those who utilize our services both today and in the future. 
collaborate, and to connect with the broader ALS community including ALS Canada’s clients and donors. This year’s event will take place in Toronto from April 29 – May 1. It will be preceded by a stakeholder workshop in support of our Vision 2024 strategic planning exercise, so named because of our expectation that effective treatments will be a reality by the year 2024 and as defined in our current vision. 
