This past week, Jennifer and I traveled to Dallas for our final appointment with Texas Neurology completing our participation in the Healey ALS Platform Trial
As we shared in a previous post, the regiment that I was participating in was suspended early due to data indicating that the drug was not providing benefit for ALS patients. Our final visit at Texas Neurology included the usual physical strength tests, more blood work, and an exit interview.
I want to express my sincere thanks and gratitude to Dr. Heitzman, Dr. Nasri, clinical research coordinator Amanda Pinal, and the entire staff at Texas Neurology. The doctors and staff were incredibly helpful, compassionate, and treated me as a family member and not as a patient.
I also want to thank Jennifer’s brother, Will (John) Barrett, and his lovely wife Anna, and all their kids (seven of them!), who hosted Jen and me in their home during our visits to Dallas. They made us feel welcome every trip, and went out of their way to make sure we were comfortable and safe.
On this trip we were also able to gather with some of my longtime and dear college and broadcasting friends from my time in Texas. We gathered at one of the best barbecue locations in North Dallas, Hard Eight BBQ.
During our last night in their home, Will and Anna made a special dinner and surprised Jennifer with a birthday cake. We celebrated Jen’s actual birthday the next day when we arrived back home in Hawai‘i, which was also the start of HPR’s spring membership campaign. I took that day to rest from our trip, but was back in the studio raising money for Hawai‘i Public radio the very next day.
While the drug trial I was participating in did not work out, there may be an opportunity for me to participate in an expanded access program for one of the other drug regimens in the Healey ALS Platform Trial. More on that later.
As noted previously, our next schedule trip related to my ALS care will be in early August to North Carolina to see Dr. Bedlack at Duke with whom we’re hoping to explore other traditional and non-traditional approaches to fight this disease.
Once the HPR spring membership campaign is completed, Jen and I will be boarding another plane, but this time to Denver, Colorado to attend the public radio super regional conference. There will be more news coming out of that conference, so stay tuned for our next update.