7.12.17 Weird New Study

So, anything goes in the name of science, right? ALS CORE (Community Online Research Engagement) thinks so, too, so they are changing the face of ALS research. From their site:

Yes, there is much to be known about the genetics, biochemistry, and environmental factors that play a role in ALS. Yes, there are many experts and subspecialists. But no one experiences the burden of the disease as you do. No one knows the frustration of the lengthy work-up for diagnosis as you do. No one knows the despair of searching for successful treatments beyond the few treatments available today.

No one else understands the toll this disease can take upon families, relationships and friends as you do.

It’s a radical idea: patients, families, doctors, and researchers working together as equal partners.

When you join ALS CORE you’ll be part of a global effort to fight ALS . You’ll work with doctors and researchers to shape the direction of research and care. For perhaps the first time in the history of this disease, your experiences, your concerns, and your ideas will take center stage.

Gives you the warm and fuzzies, huh? Pretty exciting stuff if you think about it: it’s my ALS, it’s my body the disease is destroying, and it’s my voice that’s being heard. If you recall, I am currently in a study: PHENOTYPE, GENOTYPE, AND BIOMARKERS (PGB) IN ALS AND RELATED DISORDERS through UT Southwestern (read more here and here). So the study I am starting participation in is soon is called: Microbiome Assessment in People with ALS. Ponder on that one before you research it πŸ™‚

From the study’s info sheet:

The purpose of the research study is to collect stool samples from people with amyotrophic lateral sclerosis (ALS) and healthy volunteers. Through comparison of these samples, the researchers hope to learn more about the microbiome (i.e. bacterial strains) in the stool of patients with ALS, as well as find unique biological markers, which could be used to develop new therapies.

You lost that lovin’ feelin’, whoa that lovin’ feelin’? I hope not, because this is pretty awesome. And no, Mom, I’m not going to post pictures of my “donations” but I do think it’s weird, and cool, but really weird what science is willing to study. Anything for a cure, right?

In better smelling news, I also completed the beginning phase of an at home research study called: ALS At Home (duh) which is:

a research study aiming to improve how ALS is measured, with the goal of improving future research and making it possible for patients to participate in studies that are far away from where they live.

I’ll post more about this study as it progresses, considering it won’t be as invasive for either of us to think about, unlike the other one. Let’s leave some stuff to the imagination, deal?

Lastly, I am currently working on getting into a study called: PLM Biobank Initiative Biospecimen Collection Study  through patientslikeme.com  Another really cool concept, PLM is

passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Now that’s what I’m talking about! Let’s make this ALS crap a thing of the past and get back to living.

“Dearly beloved, we are gathered here today to get through this thing called life.” – Prince 

Am I right? Anyway, the PLM study is studying:

how biomarkers in blood, urine, and feces relate to the presence and severity of disease, symptoms, and response to treatments.

We all know what you’re thinking: more “donations”? But here’s the best part of this study: it comes with round trip airfare, accommodations and paid expenses for me and a caregiver to Boston, MA! This travelbug is excited! You can have whatever “donations” you want if you pay for me to travel – I’m easy to persuade.

So, get out your readers, it’s research study open season! I’ll keep you posted, tastefully, on the exciting developments these opportunities provide. Get excited!


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