Working Together to Make ALS Livable Until We Find a Cure

Whatever It Takes

It’s going to take all of us working together, doing whatever it takes, to make ALS a livable disease and ultimately find a cure. It’s going to take researchers, clinicians, and scientists across the globe, urgently collaborating to reach our common goal – a world without ALS. 

It’s going to take people living with ALS, their caregivers, family members and loved ones across the country impassioned to pursue public policies that help discover new treatments, empower people living with ALS to live life on their own terms and help reduce harms associated with the disease. 

We are pleased to share our 2022 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year, touching on all aspects of our mission: research, care services and advocacy.

  • We’ve continued to expand our worldwide research portfolio, including the launch of a new Seed Grant Program to support exploratory research that has the potential for a significant impact on the fight against ALS.
  • We’re growing our nationwide network of Certified Treatment Centers and ALS clinics to ensure access of critical care for ALL people living with ALS, regardless of where they live. Two new clinics have received the designation as ALS Association Certified Treatment Centers of Excellence since the beginning of the year, with more than 25 clinics in the process of working to achieve the same.
  • In addition to helping lead the fight for increased federal funding for ALS research and continued expanded access to telehealth, we are empowering the ALS community to join us in pressing the FDA to approve AMX0035, a treatment shown to be safe and effective at extending life and slowing disease progression.

While these are just a few examples of some of the work being done, none of these accomplishments would be possible without you. We deeply appreciate the support, advocacy and collaboration of the ALS community and are grateful to all of you for joining us in doing whatever it takes to end ALS.

The full report can be read HERE. To continue to follow news and stories from the ALS community, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

Comments

Submitted by: Carmen C. on Thu, 08/04/2022

Not sure what to comment. I was just diagnosed in April 2022. My brother had it as well but he passed 7 years ago. I want to be kept up with ALL info on research, possible medications for improvement and anything else you could let me know. I live in Bloomville NY and working with ALS clinic in Albany. Welcome any help you could give me.

Submitted by: Amy L. on Fri, 08/05/2022

So sorry to hear you've been diagnosed with this horrible disease, Carmen.
For ALS news, you can sign up for our monthly newsletter: https://www.als.org/newsletter-sign-up
There's also a research-specific newsletter called Research Matters: https://www.als.org/research/research-matters-archive
I also recommend you reach out to your local ALS Association chapter for free resources and support. You can find their contact information at als.org/chapters.

Submitted by: Matthew S. on Tue, 08/09/2022

Good morning. I was diagnosed June 17th, 2022. I made an appointment to see my orthopedic doctor (thinking I was having knee issues) and three months later here we are. I have a great support group around me but I'd be lying if I said that I am not scared. I would like to receive all information possible. Participating in my first ALS walk 8/27 - can't wait!!

Submitted by: Amy L. on Tue, 08/09/2022

Hi Matthew. I am so sorry to hear you've been diagnosed with this disease. Please contact your local ALS Association chapter for free information, resources and support. You can find their contact information at als.org/chapters.

Submitted by: Michael B. on Sun, 08/14/2022

I am the brother of an ALS patient that was diagnosed back in 2005. For him and those of us that know and love him, his journey with ALS is still going which has allowed us to spend more time with him than most usual ALS patients get to spend. There is no time table, there is no schedule to follow and there are no second chances (at this time). It is unfortunate to see that others will be suffering this horrible fate. For those that have been recently diagnosed, let me offer some advice from our years of experience - primarily would be to have a plan for your future, especially the kind of care you may need in the later months/years of being sick. My parents are in their 80’s and they still care for my brother to give him the best life he can have at this point. He is still in his own home, since it is a collective belief that if he were in an institution of some kind, that would kill his spirit. Even though he needs 24/7 care, he has his freedom to have his own schedule…not one that is set for him by others. Is it inconvenient for my parents, of course it is. And when I was out of work, I moved home and helped take care of him for many months back in 2020 & 2021. Unfortunately, there is no real help or it is scarce in the private sector of central NY since the money needed for such help is being spent elsewhere. Yes, the local chapters do help when they can, but unfortunately, there just isn’t enough to go around for the long term care that is needed with people like my brother and it is even worse off in the rural areas, it is hard to find help that is willing to travel these days.

So again, my advice is…have a plan for the future. And I pray for all of you to live your best life possible.

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