May is ALS Awareness Month. While every month of the year brings a long list of very worthy causes to our attention-well, July’s National Ice Cream Month might be a questionable “worthy cause”, but stay with me here. The focus is awareness. We see the name of the causes, hear them discussed in circles, read statistical information regarding their origin and current status- and all with the goal of becoming more aware of what is happening all around us.
We’re aware, then what? May is ALS Awareness Month- what exactly are we aware of? We are aware of the statistics-here are a few ALS Texas facts:
There are almost 3,000 young adults, youth, and children who are ALS family caregivers in our state alone.
These aren’t all of the statistics-and yet this information sure makes us aware that in 2020, ALS didn’t stop. And neither did we.
Once we are aware, we must then BELIEVE that our awareness will bring about change, and believe in hope. My favorite comedy series that is streaming right now(and favorite by a long shot) is Ted Lasso. It is hilarious, and even more than that, it makes me feel good. I find myself immediately re-watching the second I finish an episode. I have also discovered that I’m collecting Ted’s wittiest sayings to use when I most need them:
I believe in hope. I believe in BELIEVE. – Ted Lasso
As we help bring awareness to ALS not just in May, but every month, we are helping to create hope-hope of a world without ALS. We bring awareness to the need for funding to help loan more than a million dollars in medical equipment to our families; awareness to the need for more research in understanding the cause of, and treatment for this disease; awareness to that fact that thousands of young people are helping provide care to a loved one living with ALS-and maybe delaying college, sacrificing social relationships, and feeling isolated in their situation; and awareness that we have a “Texas-strong” community of clinicians, professionals and therapists, passionate ALS Texas team members, committed family caregivers, and those living with ALS, who are all locking arms in the fight and walking alongside each other every step of the way.
In a recent April 2021, Mass General Department of Neurology webinar and audience Q&A about the HEALEY ALS Platform Trial, Dr. Daragh Heitzman of Texas Neurology in Dallas shared “I am excited about the future”- regarding ALS research and clinical trials.
Awareness leads to belief. We believe in persistence, in progress, and a world where ALS does not exist. Our hope is our belief, and belief is our hope.
Tonya Hitschmann, Director of Community Programs
[cta text=”Read the May Newsletter” link=”https://mailchi.mp/alstexas/may-patient-caregiver-newsletter”]
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