Blog: ALS/MND Without Borders

Welcome to the Alliance's blog! Here, you'll find updates from the Alliance, along with news from our members and the global ALS/MND community. Thank you for standing united with us in the worldwide fight against ALS/MND. #ALSMNDWithoutBorders

Partnership Story: Collaborating with the Live Now Foundation in Russia

On 10-26 February, 2017, Kathy Mitchell, a retired nursing professor from Algonquin College in Ottawa, Canada, and Dr. Richard Sloan, a retired physician who served as Director of the Weldmar Hospice in Dorchester, England, visited the ALS/MND teams in St. Petersburg and Moscow. Their collaborative effort with Dr. Lev Brylev and the Live Now Foundation in Russia was supported by an Alliance Support Grant for partnership travel.

Kathy and Richard’s goals were to share professional expertise related to holistic palliative care, increase skills and knowledge and change attitudes to improve quality of life for patients and families and raise awareness of the complex needs of people with ALS/MND. Kathy and Richard had been asked specifically to teach about multidisciplinary care, patient autonomy and advance care planning–subjects not generally considered in the Russian health care system.


Kathy Mitchell, Richard Sloan, and the ALS/MND team in Russia

In St. Petersburg, a one-day interactive workshop was an opportunity to communicate key issues related to patient autonomy and family and patient assessment.

In Moscow, Kathy and Richard worked with the team to complete home visits with nurse, doctor and translator. They discussed patient assessment and potential interventions with the team. A series of lectures open to health care staff in other departments gave an opportunity for a discussion of autonomy, mindfulness, and proactive self-care for families and the health care team.  

On 18 February, the Live Now Foundation organized a full-day conference for patients’ families and health care professionals to discuss new research, concepts of palliative care, patient support issues and to encourage collaboration between the St. Peterburg team and their Moscow counterparts.

Richard and Kathy established sustainable references by donating print and video resources as well as discussing reliable websites for both patients and health care professionals. They also explored resources to support the psychosocial, emotional and physical needs of families and children.

Public awareness was also increased, with media coverage during the conference.

Lev Brylev, Kathy Mitchell and Richard Sloan are advocates to improve the quality of care for people with ALS/MND and their families in Russia. They are seeking individual feedback from team members regarding change of practice since their visit to evaluate the degree to which the goals of this project have been met. They are committed to continuing the support needed to work toward a world free of ALS/MND!

ALS/MND Cheers Challenge Kickoff!

Živjeli!

The Alliance General Manager, Rachel Patterson, and Alliance Chairwoman, Carol Birks, have been on a trip through Eastern Europe visiting Alliance member associations and will be ending their trip in Ljubljana, Slovenia for the European Network to Cure ALS (ENCALS) conference.

While visiting our members, Rachel and Carol created a Global Day kickoff video while in Zagreb, Croatia with our friends at the Croatian Muscular Dystrophy Association! Rachel and Carol toasted the association for all their hard work for PALS and people living with neuromuscular disorders in Croatia. Marica Miric, President of the Croatian MDA thanked Rachel and Carol for all their work and for visiting the association.

Watch the the “Cheers” video here.

What is the “ALS/MND Cheers Challenge”?

In any language, raising a glass and saying “cheers” is an expression of goodwill and camaraderie.

For Global Day 2017, we will say “cheers” to celebrate our friendships and show appreciation for our companions and colleagues who are dedicated in the global fight against ALS/MND.

On 21 June, raise your glass and make a toast to another member association, researcher, colleague, PALS or CALS, etc. Be sure to share your photo on social media with the hashtag: #ALSMNDWithoutBorders. Let’s celebrate the Alliance’s supporters, our partnerships and our collaborative efforts. We are working together for a world free of ALS/MND!

Learn more about Global Day 2017.

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

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.

Background

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 www.radicava.com.

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.

Getting Ready for our 2017 Meetings in Boston

During the second week of April, Rachel Patterson, the Alliance’s General Manager, traveled to Boston to plan for the 2017 Alliance Meeting, Allied Professionals Forum and Symposium on ALS/MND

Rachel Patterson, GM, poses with colleagues from the MND Association, ALS Hope Foundation and ALS TDI

In Boston, Rachel met colleagues from the MND Association‘s Conference Team, as well as representatives from our 2017 co-hosts, the ALS Hope Foundation and ALS Therapy Development Institute. While on-site, they liaised with hotel staff and members of the conference AV providers, ASETS. 

Together, the team assessed meeting spaces, set lunch and dinner menus, evaluated meeting costs, planned for all of our AV needs, scheduled satellite meetings and more. Organizing the annual ALS/MND meetings can be a challenge, but our hardworking team is up for the task! 

Westin Boston Waterfront

We are excited about this year’s meeting city, Boston, and our venue, the Westin Boston Waterfront. Boston is a diverse city full of history, culture and fun. Learn more about things to do while in Boston on the city’s official website.This year’s venue, the Westin Boston Waterfront, offers accessible rooms and facilities, spacious meeting rooms, on-site dining and even a local comedy club. 

We are looking forward to seeing you in December!