By Calaneet Balas
We are on an urgent mission to make ALS a livable disease by 2030, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure.
This decision was made by our Board of Trustees, which includes people living with ALS, a current caregiver, and those who have lost loved ones, on Friday, July 9, but has been long in the making, informed by robust discussion and deep reflection.
A more unified organizational model means enhanced depth and breadth of care, increased resources and capacity that will allow us to optimize our support to serving people with ALS and their families. Care will continue to be delivered with the same focus through our valued communities across our 34 chapters, one-to-one in this streamlined organization. This decision brings us closer together, unifies us in one direction, one pathway and one goal: to do whatever it takes.
So as the news of our unification plan begins to circulate, we want to pause and reassure our entire community – people with ALS and their families, partners and clinics, and volunteers – of the organization’s ongoing commitment.
While this is a beginning, a new direction that will take a tremendous amount of input, collaboration, thoughtful and deliberate decisions to implement, we approach this process with a renewed sense of urgency. Treatments are in the pipeline, and the global community is counting on us to be as efficient and effective as possible. We are on the cusp of making great strides.
As we begin this journey together, our highest priority will remain staying focused on our work and supporting people with ALS and their families. Moving down this new path together is our best opportunity to achieve our strategic objectives and most effectively align our resources. This is what it takes. We are stronger as one. One team. One mission. One world without ALS.
Comments
This is a positive move inthe right direction. I am curious though why you did not appear to promote the IAMALS appearance on the CBS Sunday Morning Show. This group seems to be more engaged and dynamic that ALS Association. Aggressive action is important to me as my 32 year old son cannot wait until 2030 he will be dead by then. Thank you for reading my comment
Since my diagnosis in 2019, my local chapter has been there to support pALS in fighting for access to treatment and demanding change. I value my chapter tremendously. I have been unimpressed with the position the national organization has taken on promising therapies like NurOwn that have helped some pALS in unprecedented ways. ALSA is here to support pALS and our goals, not to decide what’s best for us. Please use your platform to get us help NOW. We’ll all be dead by 2030. If you aren’t with us, you are against us, and we’d just as soon have you get out of our way. We’re the ones who are dying, after all. Sincerely, Elizabeth McCormick
Whatever it takes, let's get this done. Go all the way to the President if we have to. Tell us the family of the patients what you need.
All the best.
2030 will be too late for anyone who currently has ALS. Currently we have no cure, and hope isn't enough. ALS patients deserve choices, of which now we have none. I am sitting here #dyingwaiting. Government red tape and big pharmaceuticals need to get over themselves. Make ALS a liveable disease. I'd be a lifetime customer of a drug that could hault this disease. Living with this disease and being told there is no cure is inhumane. Covid came and a year later inoculations were available. ALS has been a constant killer, but doesn't get enough attention, because it's a smaller number of people affected. As an ALS victim, I sit here and am watching my body deteriorate before my eyes. I struggle with simple every day tasks. But I'm supposed to be grateful I can still do anything on my own still. Lastly, families are victims too. I'm an only parent to my 12 yr old daughter. My heart breaks every day not knowing how long I have, and will I be around when she reaches teenage milestones. She'll be an orphan when my time is up. ALS victims deserve better because living on hope and praying for miracles is not saving lives. We need a cure now!
When funding new trials it would help to encourage all sponsors to plan for an EAP.
It seems that governments and medical associations do not care enough about this dreadful deadly disease, since it's rare; my uncle afflicted 18 months ago and died in 1 year as of diagnosis and now my lovely aunt stricken; both at around 60 yo. It's terrible and not manageable for family
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