INFORMATION UPDATE

October 2017 | Issue 51

A Message from the Chairwoman

Carol Birks, MND Australia

I would like to thank all the members who completed the recent Strategic Planning Survey. Results of the survey will help inform discussion at this year’s planning workshop. This annual session gives members the opportunity to identify key priorities for the year ahead that align with our current strategic objectives. With just 1.5 full time equivalent staff, it is important that we continue to focus on the vision of the founding organisations and work collectively as an Alliance to support the delivery of the current Strategic Plan and the GM's annual operational priorities.

There is still much to do to finalise projects and prepare for the meetings in December! But I would like to take this opportunity to thank GM Rachel Patterson Moles, Coordinator Rachel Blanton and the Board of Directors for their hard work and commitment this year to date. Working alongside GM Rachel, the Board and Alliance members over the last 4 years as Chairwoman has been an honour and a privilege. I will be working closely with our Chair-Elect Barb Newhouse in the lead up to the AGM and look forward to continuing to support the work of the Alliance under her leadership.  

It is wonderful that we have been able to award a record number of Alliance Support Grants to support travel to the meeting this year, and I look forward to meeting up with you all in Boston. With your support, engagement and collaboration, we will remain united in the fight for a world without ALS/MND!

Warm regards,

Carol Birks, Chairwoman

A Message from the General Manager

Rachel Patterson Moles, General Manager

The last 3 months have been a whirlwind both personally and professionally. As many of you know, I got married on September 30 and have just returned from 2 weeks of vacation. Thanks to all the members of our community who have sent us well wishes! I am still catching up on all the emails that flew by during my absence.

We are in the final countdown as we prepare for the 25th Annual Alliance Meeting,15th Annual Allied Professionals Forum and 28th Annual International Symposium on ALS/MND in Boston - now just six weeks away! 

Please be aware that Boston hotel rooms are going quickly. I have just been informed that the Westin Boston Waterfront, our meeting hotel, is 96% booked. The Conference Team has been working tirelessly to expand our hotel block, reserving rooms at convenient nearby hotels. Please visit the Symposium's hotel website and book your cancelable room as soon as possible. Additional hotel options will be added on or before Monday, October 23.

Plans for Boston are moving swiftly, and the agenda for the APF is set, while the Alliance Meeting agenda will be finalized next week. Both agendas will appear on our website, so keep an eye out. We received a record number of Alliance Meeting abstracts, and the Committee had quite the challenge selecting this year's presenters. We can't wait to share a terrific program with you in Boston.

The Alliance also received a record number of travel grant applications this year. In response, the Board of Directors was able to award grants to nine different members to help them attend this year's Annual Meeting - a new record. I have also been pleased to learn about regional partnerships, friendships and meetings that continue to flourish, demonstrating our members' commitment to collaborating across national and cultural boundaries. We can't wait to hear more in Boston - #ALSMNDWithoutBorders!

I want to thank my colleagues at the MND Association's Conference Team, our co-hosts, the ALS Therapy Development Institute and ALS Hope Foundation, our Treasurer Steve Bell, the Alliance Meeting and APF Program Committees and the whole Board of Directors for their contributions to planning this year's events. We are looking forward to seeing everyone in Boston!

There is much to be excited about with our Meeting rapidly approaching. However, as I close this message, it is with a hint of sadness. As you know, our Chairwoman Carol Birks will be standing down at the Annual General Meeting in Boston.

Carol has served the Alliance with dedication and distinction. It has been a pleasure and privilege to report to and work alongside my "boss" Carol since 2013. I also know it has also been a pleasure for our members to collaborate, communicate and grow with her guidance. The success, professionalization and growth of the Alliance over these last 4 years - and my own professional development - is a testament to Carol's leadership. Thank you, Carol, for your service. You will be missed! 

Best wishes,

Rachel Patterson Moles, General Manager

A Few Words from the Honorary Treasurer

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

Hello, everybody – as you all know, we have a strange financial year, running from July 1st to June 30th. At this time, it is not really possible to give a report on the first quarter, as at the time of writing, the figures will not be ready until mid-October. However, what I can report on is that subscription income continues to be excellent, and that through the efforts of our General Manager, we have secured a record level of sponsorship for the Alliance Meeting and Allied Professionals Forum (APF). The increased level of income has meant that the Board has been able to extend the working hours of our Coordinator, Rachel Blanton.

Looking ahead to Boston in December, I always get nervous at this time of the year about the numbers registering for the APF. We need to attract at least 220 attendees in order to break even, so please may I encourage you all to encourage your contacts in this field to consider attendance. It truly is a superb event, with the opportunity to hear from at least 15 colleagues from around the world on clinical practice matters and their approach to managing ALS/MND.

I look forward to meeting you all in Boston.

Welcome Our New Member!

Compassionate Care ALS (CCALS)

Compassionate Care ALS (CCALS) is a non-profit organization with a mission to support people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities, both physical and emotional, associated with the disease. The organization provides resources including equipment, educational opportunities, Medicare/Medicaid assistance, guidance and awareness with regards to living with ALS, caregiving, and end-of-life issues. CCALS offers an innovative approach to delivering support and services to our clients, which we tailor to the needs of each individual and their support network. Since 1998, CCALS has raised millions of dollars that have allowed us to provide services to more than 1,600 individuals, their families and their caregivers. We currently serve more than 727 people impacted by ALS.

We Can't Wait to See You in Boston!

Rob Goldstein, Vice President, ALS Therapy Development Institute

A Message from Our Platinum Sponsor to Alliance Members

For more information, please contact Joanna Goldstein at jgoldstein@cytokinetics.com.

Register: Boston 2017

Rachel Patterson Moles, General Manager

The 25th Annual Alliance Meeting will be held on 5-6 December 2017 at the Westin Boston Waterfront in Boston, MA, USA. Register for the Alliance Meeting!

Following the Alliance Meeting, the Allied Professionals Forum will be held 7 December. This is a meeting for healthcare professionals specialized in ALS/MND, giving them the opportunity to share practical knowledge and experience. Check out this year's agenda, register for the APF, and please share this link with clinicians in your country!

About the 28th Annual International Symposium on ALS/MND

Emma Johns, Communications Manager, The MND Association of England, Wales and Northern Ireland

The Motor Neurone Disease Association of England Wales and Northern Ireland is looking forward to welcoming delegates to the 28th International Symposium on ALS/MND in Boston on 8-10 December. The event will be co-hosted by the ALS Therapy Development Institute and the ALS Hope Foundation.

The Symposium follows the 25th Annual Meeting of the International Alliance of ALS/MND Associations and the 15th Annual Allied Health Professionals Forum.

So far 705 delegates from more than 32 countries have registered to attend the Symposium, with final numbers likely to be close to the 1,127 in Dublin last year. The three days include 102 talks across clinical and biomedical themes, with some 450 posters on display for discussion among peers.

Sally Light, chief executive of the MND Association said: "I'm looking forward to meeting old friends and new at the Alliance Meeting and then to welcoming everyone to the first joint session at the Research Symposium. I am always hugely impressed by the scope and scale of global research efforts and the opportunity the Symposium provides to bring clinicians and researchers together from across the world. It's always a catalyst for future collaborations too and is an event we are very proud to organise annually."

You can follow the research live on twitter using #alssymp and also keep track of the event reporting on the MND Association website: www.mndassociation.org/symposium and via the twitter account @mndassoc.

Networking Lunch for People with ALS/MND and Carers in Boston

Rachel Patterson Moles, General Manager

Register Here

Member Update: #EveryAugustUntilaCure

Maribel Matallanas, Volunteer, FUNDELA

For the third consecutive year, FUNDELA, the Spanish Foundation for the Promotion of ALS Research, organized an Ice Bucket Challenge campaign throughout the month of August.

And, for the third consecutive year, the results have exceeded all expectations.

On August 1st,  Maite Solas, FUNDELA's deputy chairwoman, broadcasted a video through social media explaining the reasons for the campaign, while challenging three other individuals and/or organizations renowned for their volunteering and fundraising efforts.

The challenge was accepted and reciprocated by those challenged, and the snowball started rolling.

Many people joined in and, even more importantly, they donated help find a treatment and cure to stop this ruthless killer.

We were present through our social media (Twitter, Facebook and Instagram) on a daily basis throughout August, with an average of 50+ daily Instagram reposts and many retweets, likes, quotes and shares both on Twitter and Facebook.

We can say that, thanks to this campaign, every single day and every minute of the 31 days of August, we advised and informed the Spanish public of the threat ALS represents, and of the importance of supporting research and donating to FUNDELA, in order to fulfill Spain's commitment to ProjectMine and other domestic projects.

From FUNDELA, we'll keep on fighting, following our motto #CadaAgostoHastaLaCura (#EveryAugustUntilACure) while we keep working, each and every day, to raise awareness about this disease and undertake new challenges to promote research so that we stop ALS! #AporELA

Remembering the Ice Bucket Challenge

Rachel Blanton, Alliance Coordinator

Member Update: 2017 Asia-Pacific ALS/MND Conference & China ALS/MND Patient Conference 

Shunzhen Wang, Oriental Rain ALS Care Centre

The Asia-Pacific Regional ALS/MND Meeting was held in Beijing, China, on 23-24 September. Almost 300 people were in attendance, including the Alliance's Chairwoman, Carol Birks, Board Member Ying "Kiki" Qu and ALS specialists and organizations from Australia, Russia, Malaysia, Mongolia, Japan, the United States, Beijing, Shanghai, Shaanxi and Taiwan, along with 66 ALS families from 20 Chinese provinces.

There were 22 themed presentations during the two-day conference hosted by Beijing Oriental Rain ALS Care Centre (ORACC). ORACC's Board Chairman, Wang Jinhuan, gave her speech "Light the Fire of Hope: Warm the Heart of ALS," and released the "Beijing ALS Status Quo Report." Other presenters gave speeches on 6 additional topics: ALS/MND Stories, Organization Operation, Medical Forums, Rehab Care Workshops, Services for PALS and Assistive Device Research.

Division heads from the China Disabled Persons Federation and China Social Welfare Foundation sanctioned and expressed their support for the achievements of ORACC from the past four years for giving aid to ALS/MND patients.

Mainland China was host for the first time for the 2017 Asia-Pacific Conference. This marks the first next step in understanding the current situation and opportunities for future development of international ALS care. To improve communication in this area between China and the world, professionals are sharing their experiences taking care of ALS patients. At the same time, ALS patients in China are expressing their voice. We hope that more people will listen and learn about this rare disease and provide their support.

Member Update: ELA Argentina News

Pablo Aquinos, Secretary, ELA Argentina

1) DR. JONATHAN GLASS' SPEAKING TOUR IN ARGENTINA

Dr. Jonathan Glass, one of the main experts in ALS in the world delivered 5 talks in Argentina during the week of September 11th.

First, he spoke at a public hospital in Tucuman, met the Ministry of Health of that Province and was taken on a tour around the hospital. On the second day, he did the second session at the School of Medicine of the National University of Santiago del Estero. Finally, he gave three lectures in Buenos Aires, for scientists, neurologists and patients and families.

We are thankful and honored to have had such an outstanding, professional human being who took one week of his busy schedule to visit our country, same as Dr. Lucie Bruijn did last year, as part of our National Training Days program.

Also, Dr. Glass was declared “Guest of Honor” by the City Council of Buenos Aires.

Links to videos: BUENOS AIRES PALS | BUENOS AIRES CONICET- IBYM | TUCUMÁN | SANTIAGO DEL ESTERO | BUENOS AIRES- FLENI

2) SUPPORTIVE MARATHON IN SAN JUAN

On September 23rd, the City of San Juan, Argentina, organized a supportive fundraising Running Event for our ALS Association, which gathered over 800 people.

This race received endorsement by the City Government of San Juan, province of San Juan (located by the Andes area of the country).

3) PRESENTATION OF ALS GUIDES FOR CARERS

July 31st., at the City Council of Buenos Aires, we presented the Spanish version of the ALS GUIDES FOR CARERS by the MND Association of UK, translated by the Asociacion ELA Argentina.

Many dignitaries and ALS patients and families were present, and the Guides were declared of Public interest by the City of Buenos Aires.

We thank the MND Association for authorizing this translation that is freely available to the entire Spanish-speaking world: http://asociacionela.org.ar/index.php/la-ela/guias-de-ayuda/guias-para-cuidadores

Member Update: Apoyo Integral Gila, AC Jumps to Action during the Mexico City Earthquake

Malu Leon, Apoyo Integral Gila, AC

On 19 September, a magnitude 7.1 earthquake rocked Central Mexico, collapsing many buildings in Mexico City. Several hundred people lost their lives due to this tragic event Mexican President Enrique Peña Nieto declared three days of national mourning for the victims. It is likely to take months, if not years, for some people affected by the earthquake to rebuild their lives.

Volunteers from Apoyo Integral Gila, AC saw the need and jumped to action. Volunteers worked side by side fixing 200 box lunches that were then given away to an affected community.

Please keep those affected by the earthquake in your thoughts!

Member Update: ALS Malta Makes Great Strides

Ruben Cauchi, Head Researcher, ALS Malta

This Summer marked ALS Malta’s 2-year anniversary since its inception by ALS sufferer Mr. Bjorn Formosa. Two years of hard work and big sacrifices led the foundation under Formosa’s leadership to deliver much-needed services and improvement in the quality of life of ALS/MND patients in Malta. In this brief period of time, the foundation managed to: (1) raise thousands of euros in collected donations; (2) offer a wide range of dedicated and professional services; (3) deliver high-tech and AAC devices and medical equipment; (4) distribute tailor-made motorized wheelchairs; (5) kick-start multiple research projects at University of Malta; (6) launch the first PhD Scholarship into ALS research; and (7) raise funds to open the first residential home for ALS patients. All of this has been produced on a voluntary basis!

The ALS Malta foundation is presently working tirelessly on an ALS Community Home project. The home, which will be named ‘DAR Bjorn’, is expected to be officially opened by the Prime Minister of Malta Dr. Joseph Muscat on the 20th of October 2017. The building will be inaugurated on the eve of Bjorn Formosa’s birthday. Funds for the home were raised during ‘Xarabank’ – Malta’s most watched television programme. During the fundraising drive, the Prime Minister announced via a telephone link that the day-to-day operation of DAR Bjorn will be financed by the Government.

Member Update: Father Tongue Film Awarded "Most Profound"

Alper Kaya, Vice President, ALS-MND Dernegi

A short film titled Father Tongue was awarded "The Film With Most Profound Message."

Ali Var has been living with ALS for more than 8 years. The way he has developed communication with his daughter is heart-warming. Ali Var is also a photographer and has had many exhibitions. Ali takes photographs using a special stand mounted on his powerchair. Tahir Ün, the film's director, is a successful filmmaker and a very famous photographer in the international photography community.

Father Tongue was awarded "The Film With Most Profound Message" at the 15th annual Uhvati Film Festival in Novi Sad. The best, award-winning films are placed at the Festival Uhvati Film Banja Luka (Bosnia and Herzegovinia) and Uhvati Film Rijeka (Croatia). Also, these films will be shown during the Festival of European Documentary and Independent Film "Euro-In," which will be held in December in Novi Sad. Father Tongue will also be part of the "Seize the Film Film Caravan" - a series of film screenings in cities in Serbia and Croatia.

Member Update: A National Day to Fight Against ALS in Brazil

Sthanley Abdão, Chairman, ABLE

On July 31, 2017, the President of the Republic of Brazil, Mr. Michel Temer, signed Law 13471, which validates June 21 as the National Day to Fight Against Amyotrophic Lateral Sclerosis (ALS). It is another small achievement for the patients affected in the country.

ABLE began its work in Brasilia, the Federal Capital, with the Center for Co-Existence and Support for Patients with ALS (CCA) - a space with the purpose of improving patients' quality of life through information, education and appreciation of life. Unfortunately, this disease brings terrible consequences to those who are affected by it. In the CCA, we will have the support of an interdisciplinary team who, with much love and professionalism, will deliver up-to-date information on clinical research, novel therapies, legal guidelines and social activities to people affected by ALS/MND free of charge.

Member Update: ALS Canada Updates

Alisha Martins, Marketing and Communications Coordinator, ALS Canada

Throughout the spring and fall, more than 90 communities across Canada participated in the WALK for ALS, and we continue to receive donations in support of our $4,000,000 goal. Of the net proceeds, 40 per cent will be directed to the ALS Canada Research Program and 60 per cent to community-based support for people and families living with the disease.

Over the last few months, ALS Canada has had several opportunities to see ALS research in action. Together with Members of Parliament who are part of the all-party ALS Caucus and partners from ALS Societies with whom we collaborate, ALS Canada CEO Tammy Moore visited a number of ALS clinics and research labs across the country to meet leading researchers funded by the ALS Canada Research Program.   

As a complement to the scientific conference ALS Canada hosts each year, the ALS Canada Virtual Research Forum took place over two days in August. This free online forum is a way to share information about ALS research with people living with the disease.  Over 300 people tuned in as more than 25 Canadian and international speakers discussed their work. To view replays from this year’s forum, visit https://www.als.ca/research/webinars-and-education/.

In Memoriam: ALS Canada was saddened to hear about the passing of Chris McCauley, ALS Canada Ambassador for Project MinE. After his ALS diagnosis, Chris became keenly interested in the potential of Project MinE to lead to effective treatments, and lent his voice to the project to make things better for people diagnosed in the future. Chris was a committed advocate for Project MinE, and we are so grateful for his efforts. May he rest in peace.

Member Update: First Voluntary Care Group

Jorge Abdalla, Vice President, ALS Pro-Cura Association

With the help of 25 professionals and 10 volunteers, Pró-Cura ALS Association held its first Voluntary Care Group in Sao Paulo on August 19, 2017. A total of 25 patients, 75 family members and caregivers participated, receiving the care of 25 professionals (lawyers, respiratory doctors, physiotherapists, occupational therapists, speech-language pathologists, nutritionists and psychologists) who worked voluntarily for 11 hours.

Those patients and relatives received legal advice from the lawyers, underwent medical evaluation and, with the support of the respiratory phisiotherapists, completed spirometry tests allowing the prescription of ventilatory support by non-invasive ventilation (and governmental procurement requests for the NIV were sent). Some patients borrowed our equipment and won manual resuscitators - a device that provides positive pressure ventilation.

ALS patients also received care from occupational therapists who fitted several orthotics. Speech and swallowing assessments were performed by speech-language pathologists and, together with the nutritionists, they identified several patients who needed gastrostomy and referred the patient for PEG procedures. Psychologists hosted support groups for both patients and family members or caregivers. Physiotherapists addressed various patient issues including pain and even identified a misdiagnosis. A wonderful snack was served that had a special diet for dysphagic patients.

We are sure that this action made a difference in the lives of all the patients who attended.

Member Update: Announcing the Inaugural Director of the Les Turner ALS Research and Patient Center

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

It is our great pleasure to announce that Robert Kalb, MD has been selected as the inaugural Director of the Les Turner ALS Research and Patient Center at Northwestern Medicine, Chief of Division of Neuromuscular Medicine and Professor of Neurology.

“There’s a strong scientific community at Northwestern Medicine with some of the leading lights in the ALS world,” Kalb said. “I’m looking forward to the opportunity to bring my interests and skills to Chicago, foster collaborations and make connections with an intellectually rich and devoted community.”

Kalb has spent the past 15 years on the faculty of the Perelman School of Medicine at the University of Pennsylvania. In addition to his clinical practice, he also heads a research lab focusing on the abnormal molecular processes that lead to ALS, using genetically engineered mice, neuron cultures and C. elegans, a small roundworm.

“After a more than 35-year relationship with Northwestern Medicine as a partner in ALS research and clinical care, we are delighted to welcome Dr. Kalb as the inaugural director of the Les Turner ALS Research and Patient Center at Northwestern Medicine. We look forward to a close working relationship with him. Dr. Kalb’s deep expertise in ALS scientific research and as a veteran ALS clinician plus his visionary approach to translational research gives great momentum to the Center’s position as a worldwide leader in the fight against ALS,” said Andrea Pauls Backman, executive director of the Les Turner ALS Foundation.

ALS Quest News!

Jane Alana Parkin, Discipline of Pathology, Sydney Medical School, Brain and Mind Centre, The University of Sydney 

For almost three years ALS/MND Associations around the world have been recruiting people with and without ALS to fill out the online risk factor questionnaire, ALS Quest. A large proportion of participants have heard about it through an Association.

The first results paper from ALS Quest has now appeared in BMJ Open. The authors, Jane Parkin Kullmann and Roger Pamphlett, from the University of Sydney, Australia, investigated if the ratio of the length of the index finger to the ring finger was different in people with ALS. This had been suggested in a previous small study, and could explain why exercise seems to be a risk factor for ALS (a larger ring finger relative to the index is more common in athletes).

Using a much greater number of finger ratios from around the world collected via the ALS Quest questionnaire, the authors found no difference in the index:ring finger ratio of people with and without ALS.

Thus finger ratios cannot explain the link between ALS and exercise. This will motivate researchers to find the real reason why prolonged strenuous exercise seems to predispose people to ALS. This could then lead to measures that would lessen the risk of getting ALS.

You can read the full article at: http://bmjopen.bmj.com/content/7/8/e016924
Watch the video about ALS Quest here: https://youtu.be/q5Bdvy7bVQg

Our thanks to the many Associations that have helped spread the word about ALS Quest and have contributed to the success of this project.  Please keep up the good work, since we need more respondents to compare ALS risk factors between countries.

Alliance Support Grants Are Available to Support Partnership Travel

Rachel Blanton, Alliance Coordinator 

Alliance Members Support the Rights of People with ALS/MND

Rachel Blanton, Alliance Coordinator 

Engage your Social Media Audience with #ALSMNDWithoutBorders

Rachel Blanton, Alliance Coordinator