8.9.17 Updates on Research Study Open Season


Remember the weird new studies I told you about?

I sent in my “contribution to science” this week for the  Microbiome Assessment in People with ALS. Only thing left is 2 follow up calls, so I’m D-O-N-E essentially with this study. Check!

I got a big box of all kinds of goodies for the ALS At Home study and plan to start logging measurements this week. It’s a lot of steps but once I get a routine down it won’t be bad. The equipment is pretty stink’n cool, and gives me the opportunity to track more often than my quarterly appointments to clinic.

Last but not least, Jaci and I are heading to Boston next week for the PatientsLikeMe study. Rewind, here’s the quick recap on the study and PLM:

  • PLM is passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system
  • studying how biomarkers in blood, urine, and feces relate to the presence and severity of disease, symptoms, and response to treatments.

BOOOOOOOOOOOM! I’m excited, are you excited? And we’re going to Fenway Park to watch the Red Sox take on the Yankees!

Image result for fenway

Jaci and I are so amped up we can barely contain it. Since the soaking phenomenon of 2014, August has been a huge month for ALS. What better place to visit that the site of Pete Frates Ice Bucket Challenge? Notice any familiar faces in that link?

Baseball Commissioner Robert D. Manfred, Jr. said: “Because of Lou Gehrig, Baseball has long had a connection to the fight against ALS. In his memory, we are proud to assist ALS patients and families in carrying the enormous financial burden of living with the disease that bears his name. We encourage our fans to join us in helping ALS patients receive the best care possible.”

To read more about how the #MLBFightsALS campaign, click here.

#Gehrig75 – Watch this amazing video of Gehrig’s retirement speech. He considered himself “The luckiest man on the face of the earth” and how lucky are we to see his Yankees and Frates’ Red Sox go head to head while we’re in Boston contributing to ALS research? Get ready for picture overload – these Texas gals are Big City bound!


Our first of MANY baseball games together – 2009

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