Giving Back Initiative Quarter: Fighting ALS and Supporting those with this disease

For May through July, my Giving Back Initiative supports the ALS Association and I Am ALS.

ALS is a progressive neurodegenerative disease. People with ALS gradually lose voluntary muscle function, resulting in the loss of mobility of legs, arms, speech, and eventually the ability to breathe. While people with ALS become paralyzed and often cannot speak, their minds are usually not affected so they remain aware. ALS is fatal and patients typically pass away in three (3) years. There is no cure. Yet.

This must change. And you will find this sentiment reiterated in my post.

“By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.” ~ALS Association

My heart is so close to this disease, so there is much I can say about it and much I can not. I will choose not to dwell in the spiral of this disease, as you can likely imagine enough on your own after reading the general description of how this affects one’s body. My mother passed away from ALS, and many will tell you how brave and strong those with ALS are. They are. They combat obstacle after obstacle, and just as they might have found a work-around, another loss sneaks up on them. It is progressive and ever-changing and they know it is fatal and acts quickly. They are brave because they have to be brave. They should not have to be brave against this cruel disease because this disease should have a cure.

The ALS Association works to tirelessly advocate for those with this disease and their loved ones who support them. The association gives funds for care, they give resources, referrals, face-to-face support—and they never stop advocating for a cure (you can see their latest update from the We Can't Wait Action Meeting with FDA.). They illustrate clear ways you can help - for instance, this advocacy page has four (4) drafted letters you can quickly send to your legislatures supporting the needs of those with ALS. It takes less than 1 minute to send all 4! Help to those who have this disease is desperately needed. But everyone with the disease will tell you that their ultimate hope, because we all need hope, is that this disease, as we know it, will end. Research must be supported and a cure must be found.

I am ALS is an organization focused on action. Their mission: “Together we raise awareness, increase ALS research funding, pass legislation and beyond. We rewrite the ALS story.” They share tangible ways that you can start fighting for change: From emailing your representative supporting ACT for ALS (Accelerating Access to Critical Therapies - as above, this takes about 1 minute to do!) to searching their calendar for local events related to ALS to raising awareness by reading and sharing the latest research on ALS - you can take action. I am ALS also gives space and voice to those with ALS or caregivers. You can read individual stories of people with ALS here.

While this disease is considered rare, my mother and my elementary PE teacher both had ALS in a combined 2-town population of under 2000. My sister-in-law’s family friend had ALS. A colleague of mine has a friend living with ALS. Two theater friends of mine recently lost their mentor, musical theater actor, Rebecca Luker, to ALS. How can this be rare if, in a conversation with a handful of people, two participants know someone who had ALS? “Every 90 minutes, someone is diagnosed with the disease and someone passes away from it” (ALS Association). This is not rare. We need more awareness, research, speedy clinical trials.

We need a cure.

In addition to ways you can advocate for change, you can support ALS research and needs at I am ALS or the ALS Association.