Alliance News

The General Manager Visits the UK

In January 2018, the Alliance’s General Manager Rachel Patterson Moles kicked off the new year with a trip to the United Kingdom.

First, Rachel stopped in Northampton, England, where she met with members of the MND Association team in their offices. While in Northampton, Rachel reviewed her 2018 Operational Plan with the newly-elected Alliance Chairman Steve Bell, and also reviewed the Alliance’s annual report, budget and financials with the Alliance’s Financial Officer, Ben Haynes.

Rachel with members of the MND Association Conference Team and Craig Stockton of MND Scotland

The next day, Rachel was off to Glasgow, the site of the 2018 Alliance Meeting, Allied Professionals Forum and International Symposium on ALS/MND. There, she was joined by her colleagues from the MND Association’s Conference and Symposium Teams, as well as Craig Stockton, the CEO of this year’s host association, MND Scotland. First, they visited and toured the Crowne Plaza Glasgow, which will be the site of the 26th Annual Alliance Meeting. Then, they walked next-door to the Scottish Event Campus, the site of the 16th Allied Professionals Forum and 29th International Symposium on ALS/MND.

On-site in Glasgow, Rachel and her colleagues made venue and seating plans, reviewed costs and sponsorship plans, planned for AV and technical needs and selected lunch and dinner menus (no chicken!).

After her meetings, Rachel took some time off to get to know the city of Glasgow. Even in January, the city was beautiful, friendly, easy to navigate and full of fun activities. We can’t wait to see you there in December!


Congratulations, Winners!

Every year, the Alliance is proud to present two special awards during the Opening Ceremony of the International Symposium on ALS/MND.

On December 8, 2017, at the Westin Boston Waterfront, we presented this year’s Humanitarian and Forbes Norris Awards to a crowd of nearly 1,300 attendees.

The Humanitarian Award

The Humanitarian Award recognises a non-scientific contribution to the global ALS/MND community. In 2017, we were honored to recognise Peter Frates, Patrick Quinn and Anthony Senerchia, Jr., the founders of the Ice Bucket Challenge. The IBC raised over $200 million worldwide, making it the single largest fundraising idea in ALS/MND history. Moreover, the notoriety of the IBC has raised awareness of ALS/MND on a global scale. Pete, Pat and Anthony, 3 people living with ALS/MND, were the creators of the Challenge, and they have made a remarkable contribution to our community. Sadly, Anthony Senerchia, Jr., lost his battle with ALS/MND on November 25, 2017, at the age of 46.

This year, Alliance Chairman Steve Bell presented the Humanitarian Award. Nancy Frates – Peter’s mother – accepted the award bowl in-person, on behalf of the three families. Watch a brief interview with Steve and Nancy on Twitter. (Thanks @mndassoc!)

Steve Bell and Nancy Frates

Steve Bell presents the Humanitarian Award to Nancy Frates, accepting on behalf of the winners

The Forbes Norris Award

The Forbes Norris Award honors the memory of Dr. Forbes “Ted” Norris by recognising a neurologist who has shown exceptional dedication to caring for people with ALS/MND and conducting research to find a cure. The 2017 Forbes Norris Award winner was Dr. Merit Cudkowicz, a committed and compassionate clinician and researcher. Among her many accomplishments, Dr. Cudkowicz is the Chief of Neurology and Director of the ALS Clinic at Massachusetts General Hospital, and she was the co-founder of NEALS

Dr. Mamede de Carvalho, the 2016 Forbes Norris winner, introduced the award in Boston. Although Dr. Cudkowicz couldn’t be with us to accept her award bowl in-person, she shared this heartfelt message. We thank Merit for her dedicated service to people with ALS/MND.

Merit Cudkowicz

Dr. Merit Cudkowicz

Congratulations to this year’s winners. Thank you for being a part of the global fight against ALS/MND.

ALS/MND Research Funding by Alliance Members

During the Alliance Meeting in Orlando in December of 2015, Rob Goldstein, a member of the Board of Directors and leader of the Research Working Group, had conversations with Alliance members about their research funding practices and what they might like to learn about how other members fund ALS/MND research in their countries. Understanding how and when members fund research will help the Board as they draft the next Strategic Plan.

Following these conversations, throughout 2016, Rob Goldstein, assisted by his colleague Emer Martin at the ALS Therapy Development Institute, designed and distributed a 10-question survey. The five main goals of this survey were to determine:

  • How many Alliance members funded ALS/MND research
  • How much each organization spent on ALS/MND research
  • The proportion spent on basic and clinical ALS/MND research
  • The manner in which members make ALS/MND research spending decisions
  • The current collaborative trends among members in funding ALS/MND research

The survey was distributed in October of 2016, and responses were collected in December of 2016. All respondents were reporting on their research expenditure during the previous fiscal year, 2015/2016. 

Here are some highlights from the data they collected:

  • 41 member associations responded to the survey and shared data
  • 33 out of 41 organizations indicated that they do fund ALS/MND research in some capacity; 8 out of 41 organizations indicated that they do not fund ALS/MND research
  • Alliance members who responded to the survey reported spending a total of $67,168,400 USD (subject to fluctuations in exchange rates)
  • North America was the region with the highest reported level of spending (over $40,000,000 USD)
  • In most regions, spending on basic research exceeded spending on clinical research
  • The most commonly cited research collaboration was Project MinE

Having gathered these insights, it is now useful to consider next steps. We would like to gather more information and refine the information we have to ensure accuracy and clarity. Rob Goldstein plans to give a detailed report on the initial survey results to members during the Annual Meeting in Boston. Then, the Working Group, led by Rob Goldstein, would like to gather more in-depth data through an updated survey and compare members’ spending on research in previous years to current and future spending.

Special thanks to Rob Goldstein and Emer Martin for their hard work and for gathering and sharing these insights on behalf of the Alliance! Questions regarding this data should be sent to the Alliance at

The Chairwoman and General Manager Travel to Europe

by Rachel Patterson, General Manager

Rachel and Carol pose with Marica Miric, President of the Union of Croatian Muscular Dystrophy Societies, and team members in Zagreb

Rachel and Carol pose with Marica Miric, President of the Union of Croatian Muscular Dystrophy Societies, and team members in Zagreb

In May, Chairwoman Carol Birks (MND Australia) and I took our annual trip – this year, visiting Eastern Europe. Our first stop was with the Croatian Union of Muscular Dystrophy Societies in Zagreb. President Marica Miric introduced us to her staff and volunteers and explained the special programs and services they offer to help people with ALS/MND and other neuromuscular disorders in Croatia. We also learned about the intricacies of the local healthcare system and what steps are being taken to advocate or the needs of people with ALS/MND within that system. Our colleagues in Croatia were excited to learn about opportunities for support and collaboration with the Alliance. We are hoping that Marica and her team will be with us in Boston to share their work with the whole community!

Dr. Aleksandra Dominovic (front right) and her team pose with the NIV machines they fundraise to purchase for patients

Next, we were off to Bosnia and Herzegovina, to the city of Banja Luka. There, we met with The ALS Association of Republika Srpska, an association that joined the Alliance in 2016. Dr. Aleksandra Dominovic and her dedicated team took us on a tour of the public hospital and taught us more about how ALS/MND care works in their country. Later that day, we had the privilege of meeting several local people with ALS/MND and their families to introduce the work of the Alliance and answer questions about international care, advocacy and programming. We also spoke with local and national news outlets and met the Minister of Health. We hope these efforts put the spotlight on the needs and rights of people with ALS/MND in Banja Luka. Dr. Dominovic wrote to us to tell us about the experience:

By organizing a meeting with patients and their family members, we made our suffering visible all over the world. Our patients were very happy about this visit because they hope study drugs will become available to them like they are used in other countries. Rachel Patterson’s presentation about the Alliance opened to us new perspective of possibilities of cooperation… We look forward to mutual activities in creating a future without ALS.

Rachel Patterson poses in front of the Convention Center in Ljubljana on the first day of the ENCALS Meeting

After our visit to Banja Luka, we headed to Ljubljana, Slovenia for the 2017 Meeting of the European Network to Cure ALS (ENCALS). While in Slovenia, we had the opportunity to share the work of the Alliance at a satellite meeting for European allied health professionals, where we collaborated with colleagues from Slovenia, Scotland, England, Finland, Norway, Spain, Belgium, the Netherlands and more. We felt energized by scientific presentations about the next frontiers in ALS/MND clinical trials, and we caught up with European researchers and neurologists who have dedicated their lives and careers to finding treatments for ALS/MND.

Before returning home, Carol and I made one last stop to visit our colleagues at the Motor Neurone Disease Association. In Northampton, we met with Alliance Treasurer Steve Bell and Financial Officer Andrew Zielinski to finish preparations for the fiscal year 2017-2018 budget, and liaised with the Conference Team to finalize exciting plans for Boston in 2017. We also had the pleasure of meeting with MND Association staff, including CEO Sally Light and the communications team, and learning about their upcoming campaigns and the Association’s advocacy efforts in England, Wales and Northern Ireland.

Sadly, this will be my final annual Alliance trip with Carol Birks as she prepares to retire from her position as Chairwoman in December. However, I am looking forward to continuing the tradition with our incoming Chairwoman, Barbara Newhouse. In 2018, plans are underway for us to visit member associations South and Central America and learn more about how the Alliance can support member programming and advocacy in the region. I am enthusiastic about the power of our international community and our ability to reach, support and encourage member associations all over the world. Together, we are working to improve the quality of life and care for people with ALS/MND everywhere. Stay tuned for our next travel update!

Registration Now Open: Boston 2017

Registration is now open for the 2017 Alliance Meeting, Allied Professionals Forum and Symposium on ALS/MND.

These events will be held in Boston, MA, USA, at the Westin Boston Waterfront Hotel. Book your hotel room here!

Here is all the information you need to join us in Boston.

25th Annual Alliance Meeting (5-6 December)

The 25th Annual Alliance Meeting will be held on 5-6 December. During the Alliance Meeting, ALS/MND associations from all over the world come together to share their knowledge and experience. The agenda will focus on issues of organizational development. REGISTER HERE.

15th Annual Allied Professionals Forum (7 December)

The 15th Annual Allied Professionals Forum (APF) will be held on 7 December. During the APF, healthcare professionals with experience in ALS/MND share their hands-on experience and practical knowledge. The agenda will focus on ideas practitioners can apply in their own clinical settings to improve the care and management of people with ALS/MND worldwide. REGISTER HERE.

28th Annual Symposium on ALS/MND (8-10 December)

The 28th Annual Symposium on ALS/MND will be held on 8-10 December. The symposium is the largest medical and scientific conference specific to ALS/MND. Each year, the symposium attracts over 800 neurologists and researchers. REGISTER HERE.

A special thanks to this year’s co-hosts, ALS Therapy Development Institute and the ALS Hope Foundation