News updates

BREAKING NEWS – Radicava Approved to Treat ALS/MND in the USA

On May 5, 2017, the US Food and Drug Administration (FDA) approved the drug Radicava (edaravone) for the treatment of ALS/MND patients in the United States.


The compound edaravone was developed by Mitsubishi Tanabe Pharma Corporation in Japan. Edaravone was originally marketed for use in stroke patients. Later, the company decided to test edaravone in people with ALS/MND. After a series of Phase 3 trials in Japan, in 2015, regulatory bodies approved edaravone to treat people with ALS/MND in Japan and South Korea. Edaravone is marketed under the brand name “Radicut” in Japan and South Korea.

In June of 2016, MT Pharma America submitted an application to the FDA for regulatory approval in the US. This application was approved by the FDA May 5, 2017. Edaravone will be marketed as “Radicava” in the US and will be distributed commercially by MT Pharma America.

How Does Edaravone Work?

Edaravone is thought to protect cells from oxidative stress. Oxidative stress occurs when the body produces too many free radicals and can’t effectively counteract their effects with antioxidants. Preventing oxidative stress may help to prevent motor neuron death in people with ALS/MND.

How Is It Administered?

Edaravone is administered by intravenous injection. This explanation comes directly from MT Pharma America’s website:

RADICAVA is administered in 28-day cycles by intravenous infusion. It takes 60 minutes to receive each 60 mg dose. For the initial cycle, the treatment is infused daily for 14 consecutive days, followed by a two-week drug-free period. All cycles thereafter are infused daily for 10 days within a 14-day period, followed by a two-week drug-free period.

How Effective Is It?

Mitsubishi Tanabe conducted its final Phase 3 study in Japan with 137 ALS patients. According to data made public by MT Pharma America, during this six-month trial, the group of people given edaravone showed a 33% improvement in their ALSFRS-R scores, as compared to those given placebo.

All of the patients in this study began using edaravone early in their disease progress (soon after diagnosis). The most common side effects were headache, trouble walking and bruising at the site of injection. In a very small number of patients, hypersensitivity or allergic reactions did occur, which could be life-threatening. Learn more at

Who Will Be Able To Access Edaravone?

At this time, edaravone is only approved for use in Japan, South Korea and the United States. Only citizens of these countries can access edaravone through the channels of their respective healthcare systems.

People with ALS/MND living outside these countries can, and have, attempted to access edaravone in Japan. A representative of the Japan ALS Association has provided a FAQ document that explains how international patients may access Radicut legally in Japan. This process can be challenging and expensive.

A purportedly similar compound with the brand name “Arone” is manufactured and distributed by Edinburgh Pharmaceuticals in India; this compound is unregulated. Neither Mitsubishi Tanabe nor MT Pharma America have any knowledge of its composition or manufacture. Anyone accessing this drug in India should proceed with caution, knowing that its safety and efficacy have not been tested. 

MT Pharma America said in a statement:

RADICAVA and Radicut are both manufactured only by Mitsubishi Tanabe Pharma Corporation in Japan in an FDA-approved facility. RADICAVA and Radicut undergo extensive quality control throughout the manufacturing and supply chain processes. We cannot comment on the quality, safety or efficacy of edaravone products manufactured by other companies in other facilities.

For more information and to access the best possible resources in your country, please contact your local ALS/MND association. Find contact information in our Directory.

News & Press Releases From Our Members In The US:

The ALS Association: Press Release

The ALS Association: FAQ About Radicava

ALS Therapy Development Institute

ALS Hope Foundation

Les Turner ALS Foundation

Other Resources:

Official FDA Announcement

Official MT Pharma America Press Release

Reuters News Story

This page and accompanying links will be updated if and when more information becomes available.

Position Available: Administrative Coordinator


8 June 2016

The International Alliance of ALS/MND Associations is currently seeking an Administrative Coordinator, a part-time position. The details appear below, including our classified ad and a job description.

We are planning to employ this individual in the United States, but would be open to candidates abroad if circumstances permit. Someone geographically near the General Manager (who resides in the greater Philadelphia region) is highly preferred for training purposes. This would be a work-from-home (remote) position for a qualified and motivated individual. We are open to a variety of candidates.

To apply, please review the materials below and send a resume and letter of interest to Rachel Patterson, General Manager, at Deadline: 1 July.

JOB AD: Administrative Coordinator (0.4 FTE/15 hours per week)

The International Alliance of ALS/MND Associations is an international, peak body organization. Our members are patient support and advocacy associations from 35 countries. The Alliance is committed to supporting our members to make a difference in the lives of people with Amyotrophic Lateral Scerosis (ALS) and related Motor Neurone Diseases (MND).

Would you like to make a difference by helping us to achieve our Mission:

  • To promote optimal care and support for all people living with ALS/MND
  • To facilitate information exchange and education at an international level
  • To encourage collaboration, dissemination and translation of ALS/MND research

You will be responsible for supporting the work of the General Manager (GM). You will work with the GM to ensure that the organisation’s operations and communications run smoothly. You will also be responsible for providing critical administrative support to the GM to keep the global ALS/ MND community up to date.

This position offers variety together with flexible working conditions. Do you:

  • Have the desire and motivation to make a difference in the ALS/MND community?
  • Have tertiary qualifications and administration experience?
  • Have strong interpersonal and communication skills?
  • Like to work independently with the support of a small motivated and committed team?

Knowledge of ALS/MND, while an advantage, is not a prerequisite as training and a comprehensive orientation program will be provided.

JOB DESCRIPTION: Administrative Coordinator

PART-TIME: 15 hours/week; 12-month contract; $15-$20/hour commensurate with experience

REPORTS TO: The General Manager of the Alliance

KEY PURPOSE: The post-holder will be responsible for assisting with key tasks related to the day-to-day administration of the organisation and will work closely with the General Manager to ensure that the organisation’s operations and communications run smoothly. The post-holder will provide critical administrative support to the General Manager. This post is time-limited to 12 months and continuation is contingent upon review of position and available resources.


  • To provide administrative support and services to the General Manager, assisting her in meeting objectives related to the Strategic Plan
  • To copy write and distribute communications to the membership
  • To monitor and update social media platforms and design of the quarterly newsletter, under the supervision of the General Manager
  • To assist the General Manager in drafting letters and documents; to copy-edit and proofread existing documents and communications
  • To assist the General Manager in reading and routing correspondence
  • To assist the General Manger to maintain and grow income through membership subscriptions, sponsorship and donations
  • To assist the General Manager in administrating annual subscription payments and maintaining membership records
  • To assist the General Manager in maintaining an up-to-date website and informational materials for the Alliance
  • To assist the General Manager in recording and processing donations
  • To assist the General Manager in maintaining a calendar and appointment schedule



Bachelor’s Degree in a relevant field (English, Communications, Business etc.) preferred. Equivalent work experience considered.


  • Proven communication skills, both written and verbal. (Writing sample required.)
  • Experience with a variety of software packages; strong working knowledge of all Microsoft Office programs.
  • At least 2 years’ administrative work experience or equivalent.
  • Proven ability to self-motivate and work independently.
  • Experience in the non-profit sector preferred.
  • Experience in external communications and social media platforms.
  • Familiarity with or knowledge of ALS/MND while an advantage is not a prerequisite as training and a comprehensive orientation program will be provided.

Skills and Aptitude

  • Ability to work on own initiative.
  • Ability to prioritise workload.
  • Ability to work to deadlines.
  • Ability to communicate clearly and succinctly both verbally and in writing at all levels.
  • Strong interpersonal skills and ability to work flexibly and collaboratively.
  • Attention to detail.
  • Adaptable and flexible.


  • Flexible approach to duties.
  • Ability to work outside normal hours on an occasional basis.
Please send an application letter explaining why you would be the best fit for this position, along with a resume, to Rachel Patterson, General Manager, at Deadline: 1 July.

Collaboration For A Cure

The text below is a shared statement about the Collaboration for a Cure event for use by all the associations in attendance. The International Alliance of ALS/MND Associations is honored to be part of this community! We look forward to all that we can achieve together.

Thanks in part to last summer’s ALS Ice Bucket Challenge, the first Collaboration for a Cure took place on April 17, 2015, in Arlington, Virginia. Representatives from 18 organizations who are fighting amyotrophic lateral sclerosis (ALS) gathered to identify key areas where collaboration among their organizations could help drive forward collective efforts to help people living with this disease. One such attendee, Dr. Kevin Horton, Chief of Surveillance and Registries within the Division of Health Studies, presented information about the National ALS Registry.

The invitation to this first meeting was to individuals at many of the leading ALS organizations. Patients who lead some of those organizations were invited. Although, none were able to attend, they were well represented by their chosen delegates. The group is committed to having people living with ALS and caregivers of people with ALS participate in future meetings and task groups. The following organizations were represented: ALS Canada, ALS ETF, ALS Hope Foundation, ALS Therapy Alliance, ALS Therapy Development Institute (ALS TDI), ALS Worldwide, Answer ALS, International Alliance of ALS/MND Associations, Iron Horse Foundation, Kevin Turner Foundation, Les Turner ALS Foundation, Muscular Dystrophy Association (MDA), Prize4Life, Project A.L.S., Target ALS, Team Gleason, The ALS Association, and The Robert Packard Center for ALS Research at Johns Hopkins.

The day began with a welcome from Barbara Newhouse, President and CEO of The ALS Association. While The ALS Association brought together this first meeting, it was acknowledged that future meetings will be convened and driven forward by the community of ALS organizations. Newhouse introduced the moderator for the day, Paul De Morgan, who has 16 years of experience in facilitating and mediating multi-party, consensus-oriented policy dialogues and site-specific dispute resolution processes.

After a full day of discussion (described below), there was near unanimous commitment to continue to support the collaborative into the future. While it was agreed to continue to discuss key issues pertaining to ALS as a group, it was acknowledged that the power of the meeting was in the diverse opinions and levels of experience. It was noted throughout the meeting that the focus must remain on the patient and finding solutions for their urgent needs. It was also unanimously agreed that despite the many diverse opinions, the participants were eager to work together if it meant immediate action.

Many areas need to be addressed, but for this meeting, three areas of focus were identified in advance to be topics of discussion. The first topic involved gaining consensus on the prevalence and incidence of ALS. The goal was to share detailed information of the known and unknown regarding current data and gain alignment in messaging regarding incidence vs prevalence. Individuals and organizations have used a range of estimates when describing the number of people living with ALS in the United States, from as few as 12,000 to as many as 40,000 or more. Representatives from the Agency for Toxic Substances and Disease Registry (ASTDR), including Kevin Horton, DrPH, MSPH, CPH, Chief of Surveillance and Registries within the Division of Health Studies, and Paul P. Mehta, M.D., Medical Epidemiologist, presented information on the National ALS Registry and its efforts to identify people living with the disease to better understand incidences and prevalence.

After a robust discussion among members of the group, it was determined that the data is not sufficient to support currently reported numbers of people living or diagnosed with ALS. The registry’s first report is based on one year’s worth of data. Although it is consistent with published literature, the organizations agreed that the first year data from the registry may have under-reported prevalence. Therefore, the organizations agreed that it was critical to work together to urgently explore options to enhance the registry. A task force made up of designees from the ALS organizations in attendance will join together to help accomplish that goal. Creating a strategy to foster enrollment through clinical experiences and also in patient and caregiver outreach are two areas agreed upon that need immediate improvement. It was ultimately agreed that all people living with ALS need to be counted and their medical voices heard through their critical data.

The second discussion of the day focused on the formidable challenges that exist to bring a new therapy to market and the development of a guidance document to help companies and researchers involved in ALS drug development navigate the regulatory process and speed drug development. Given that the U.S. Food and Drug Administration (FDA) does not have the resources to develop guidance documents for each disease, this group is unified in a commitment to assure the guidance document is not only produced but also reflects the recent community driven efforts. Resources from the ALS Ice Bucket Challenge are dedicated to that assurance. The initiative will involve participation from the entire ALS community: people living with ALS, ALS organizations, clinicians, researchers and partners in the industry. It will be governed by a steering committee comprised of content area experts who will chair individual working groups focused on specific chapters of the guidance document including, biomarkers, benefit-risk, clinical trials and outcome measures, natural history and diagnosis. The steering committee will also be advised by a patient and caregiver advisory committee to ensure patient input throughout the guidance development process. This will be the first patient-focused guidance for ALS product development that would be submitted to the FDA. And, it will be a consensus-based work product that incorporates stakeholder views in areas such as trial design, biomarkers, surrogate endpoints, patient-reported outcomes, benefit-risk and others.

The group fervently agreed to coordinate efforts to create a needed momentum for this important guidance. As part of this initiative, a communications plan will be included in order to provide the ALS community with timely input, updates and milestones.

Finally, expanded access was a topic of discussion and how ALS organizations can better communicate information about treatments in development. Because there is currently only one approved drug to treat ALS and given the devastating nature of the disease, there are often calls to support widespread access to therapies that have shown some promise in early stages of development. The FDA has a number of existing authorities that are designed to expedite the development and approval of new treatments and also provide access to those treatments, including outside of a clinical trial and prior to FDA approval. Those authorities include: expanded access; accelerated approval; fast track; priority review; breakthrough therapy designation; and orphan drug designation.

The conversation centered on educating attendees about these authorities as well as other related issues, such as “Right to Try” laws that have been introduced and enacted in states across the country. “Right to Try” laws seek to provide access to investigational therapies outside of FDA governed expanded access programs. The session also focused on how ALS organizations can communicate information about promising investigational treatments to people with ALS and how organizations can respond to calls for widespread access to those potential treatments.

The group recognized that ALS organizations can do more to explain the differences between the various FDA authorities mentioned above. Furthermore, the group acknowledged that people living with ALS have unique perspectives as it relates to the above options and should help guide organizations when they choose how to communicate opinions of a new therapy or treatment concept. It was recommended that a task force convene to discuss expanded access issues.

Those in attendance agreed that there will be future meetings for the Collaboration for a Cure and will immediately begin to work together to follow up on the various action items that were identified by the group.

One final note: the group was shown a video and letter from Pete Frates and Pat Quinn, co-founders of the ALS Ice Bucket Challenge, asking all the organizations to work together and follow their lead in order to make the event a success again in 2015 and the years to follow. ALS Association Chief of Staff Brian Frederick outlined for the group a collaborative Ice Bucket strategy that Pete and Pat are spearheading, which will be for the benefit of the entire ALS community. The message was well received and all agreed we are a greater force when working together.

Major cause of MND discovered on chromosome 9

An international research team, co-funded by the Motor Neurone Disease Association of England, Wales & NI (MND Association), has identified a new gene on chromosome 9 that appears to cause nearly 40% of cases of the inherited form of motor neurone disease (MND). This is the most common cause of the disease found to date and the discovery could lead to tests for families who have a history of MND. [Read more…]

ALS /MND Community Loses Ambassador of Hope and Humour

Andrew Fleeson

Andrew was not a patient; and he was not suffering – he was living with ALS/MND and fighting it every day of his life since diagnosis in 1983.  And, at the same time, he was living well and enjoying life.

Andrew was a Trustee and Honorary Treasurer of MNDA for ten years, and then joined the ALSA National Board of Trustees while he lived in the US.  At the same time, he was a Director and Honorary Treasurer of the International Alliance from its inception in 1991 until 2010.

In his official roles, Andrew maintained a strong focus on patient support, wanting to improve the care and assistance available to help people live as well as they could for as long as they could.  With a less aggressive form of ALS/MND, he was able to share  his views and experiences with the many who now lead and support ALS/MND organizations around the world, ever passionate for the fight against the disease; confident and hopeful that a cure would be found.

While we remember Andrew the Board Member and Trustee as a hard and focused worker for ALS/MND, with a unique approach to the multi national financial report, we best remember him as the individual he was, and for the joy and happiness that he brought into our lives.

Who can forget the Alliance “warm and fuzzy” dinners, with Andrew resplendent in his red flashing devil’s horns, regaling all within earshot of his latest escapade.  Or his sensitive and focused toasts, offered to all who were part of the fight he was passionate about, encouraging us to develop quality services for individuals who had needs and wants, and to support research as the pathway to the end of ALS/MND.  His enormous range of lurid ties, worn to shock and delight, with a twinkle in his eyes and an enormous grin that was his trademark.  How many bars have shared drinks with Andrew, ever willing to act the host, encourage participation, and keeping an eye for others who could be roped in to extend the party.  The late nights, and then a bright eyed and bushy tailed Andrew would reappear, ready to work and play.

He said so much with a look and a cheeky grin.  And now we share the memories.

Andrew Fleeson – in your fight against ALS/MND, you brought happiness and joy to so many people, and have challenged us to maintain our fight to beat ALS/MND – you will be sadly missed.

Andrew died on 15 June 2011 in Northampton, England.  He was 66 years old.  He lived with ALS/MND from 1983.