Spread the Word: It’s Global ALS/MND Awareness Day

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Every year on June 21 the International Alliance of ALS/MND Associations celebrates Global ALS Awareness Day, a day of recognition of ALS/MND – a disease that affects people in every country around the globe.

ALS is not unique to the US, it’s a global problem. It does not discriminate based on race, ethnicity, socioeconomic status, or region. People are living with the disease all over the world, and for every person diagnosed, the impact of the disease will forever be felt by their loved ones.

Calaneet Balas, President and CEO of The ALS Association, has been active with the organization’s board since 2017 and is currently the board chair. “I’m honored to be a part of this amazing assembly of ALS leaders from around the world,” said Balas. “The Alliance has both the vision and potential to foster the kind of international collaborations that will result in faster and more cost-effective research as well as broader access to therapies, assistive technology, and consistent standards of care. Global ALS/MND Awareness Day provides us with an opportunity to engage communities on every continent in our worldwide partnership to find treatments and a cure.”

In recognition of Global Day this year, we spoke with Catherine Cummings, Executive Director of the International Alliance of ALS/MND Associations, to learn more about her, the mission of the organization and her determination to do whatever it takes to create a world without ALS.

Please tell us a little bit about yourself and your connection to ALS if you have one.
“I have multiple connections to ALS/MND but the one closest to home was my mom, Bette, who passed from ALS/MND in 2005. Mom was an amazing woman who gave tirelessly to her community; in her name I volunteered with ALS Ontario and ALS Canada and was on the Board of Directors of those organizations from 2005 – 2013. I have always worked in the not-for-profit sector, often internationally, so when the opportunity came up at the International Alliance of ALS/MND Associations it seemed like the perfect alignment of my personal and professional passions.”

Please tell us about the International Alliance of MND/ALS Associations and its mission.
The Alliance is a global network of ALS/MND associations informed by PALS/CALS that builds capability for its members and connects to external stakeholders. We help members thrive by adding value to existing and future associations through curation and creation of knowledge and by acting as a global gateway through which Alliance Members connect PALS and CALS to internal and external stakeholders.

Collectively we all work towards the vision of A World Free of ALS/MND!”

2020 was a challenging year for everyone, but particularly for people living with ALS and their families. In your opinion, how did the COVID pandemic impact ALS research and care globally?
“My observation would be that our community stepped up and adopted the attitude of ALS/MND does not stop, so neither will we!

On both the care and research fronts, projects continued to move forward and in fact creative new ways of delivering services were innovated, some of which we hope will stick.

On the care side, people living with ALS/MND have been saying for years that getting to a clinic on a regular basis is challenging as the disease progresses and wished that the community would embrace telemedicine. The pandemic made almost all clinics pivot to some sort of telehealth system that was fully funded (a key to success) and that has been very helpful for our community. There are particular times, such as diagnosis or end of life discussions, where in-person is more helpful, but, on the whole, we have been told loudly and clearly that some form of telehealth should remain after we emerge from the pandemic.

For research, there were many projects that moved forward despite the pandemic and again innovation happened on the research side. For example, patient outcomes in clinical trials were moved to a home capture system where possible. 

One piece of feedback we have heard about the impact of the pandemic is the enormous burden it has placed on family and friend caregivers. Since people living with ALS/MND are vulnerable, many folks are isolated at home with no external providers coming in to provide service at the advent of the pandemic. This meant that family and friends had to take on a bigger role with relentless hours and no respite in most cases.”

What new ALS developments and/or advances do you foresee internationally in the next year?
“The big conversations we are involved in right now at a global level are improving regulatory pathways, the spectrum of possibilities through innovation and technology, and genetics.

With the fulsome pipeline of ALS/MND treatments that exists currently, it is important that we strive towards global regulatory cooperation and alignment to improve access to new treatments for ALS/MND. It is often said that the ALS/MND clock ticks faster and there is urgency to not duplicate efforts for regulators in each country even though each jurisdiction has its own unique regulatory considerations. We have a member roundtable in September to discuss how the International Alliance can act as a catalyst to spur this collaboration amongst regulators.

If one looks at the spectrum of technology needs across the ALS/MND journey from the basic physiological needs, through to feeling safe and secure, and finally to the important elements that help us connect with our families and friends, technology is the enabler that helps us maintain the quality of life to the best of our abilities. Technology can help close the gap between our abilities and the world around us and also make us more fulfilled, both in life and everyday living. The Alliance through its Innovation and Technology Advisory Council works in this space to leverage worldwide strengths and eliminate the duplication of efforts.

Availability of genetically targeted therapies, and more in development, have created the need to increase education and awareness of the genetic counselling and testing.  Since the size of the seemingly sporadic population is so much larger than the size of the familial ALS/MND population, there are probably just as many, if not more, patients with genetic ALS/MND, which puts an emphasis on offering counselling and testing to everyone.”

On this global day of recognition of ALS/MND, what do you want people to know about ALS?
“This year for Global Day we are launching a Caregivers rights document. The pandemic has clearly demonstrated the crucial role that caregivers play in the support and care of people living with ALS/MND. While caregivers were always part of the Fundamental Rights of People Living with ALS/MND document, our PALS and CALS Advisory Council felt that there needed to be a standalone document to emphasize the importance of caregivers!

In addition, the existing Fundamental Rights of People Living with ALS/MND document has been updated to include remuneration where possible and the tenets that emerged from our Genetics roundtable that fundamentally support each person diagnosed with ALS/MND have access to: 

  • up-to-date education about clinical genetics in ALS/MND.
  • genetic counselling. 
  • genetic testing. 
  • and to be safeguarded against genetic discrimination.

Additionally, subject to education and counselling, blood relatives should also be given the same access, where relevant.

In summary, our takeaway for Global Day is that we want to emphasize the Fundamental Rights of People Living with ALS/MND and their Caregivers!”

Join the fight… Spread the word! Global Day is an event that knows no boundaries, so everyone can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND. Use the hashtag #ALSMNDWithoutBorders TODAY to help raise awareness and funds for people living with ALS and their families around the world.

To learn more about how you can get involved and make a difference for people living with ALS and their families, click HERE.

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