COVID-19

Hoo-wee! Am I glad summer is over. Not because of any changes or challenges from my ALS, but because of a series of unexpected life events. This year, my summer months felt as if I were on an airplane that hit turbulence, and the “fasten your seat belt” sign…

There I was, just living each day and minding my own business. I was following all the guidelines from the U.S. Centers for Disease Control and Prevention and wearing a mask everywhere I went, when all of a sudden, BAM! The COVID-19 virus found me. What followed were…

Note: This story was updated June 16, 2022, to reflect that competitor Kyle Brown was not disqualified, but did not finish the swim portion of the Ironman World Championship within the time limit and was not able to move forward in the competition.   Patrick Harfield was on his last legs.

Every Memorial Day, I go with my mom, daughter, and son to the Lakeside Cemetery in Hancock, Michigan, to attend a ceremony honoring veterans. I drive separately in case I need to return home quickly to help my husband, Todd, who has ALS. The ceremony ends with the…

A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…

“Mirror in the bathroom Please talk free The door is locked Just you and me.” The time for annual resolutions to be implemented has arrived. The most impactful betterment plans arise from an honestly objective self-review. What more appropriate figurative…

Thanks to the implementation of proactive safety measures for the COVID-19 pandemic, Mitsubishi Tanabe Pharma America (MTPA) has enrolled at least 33 adults with amyotrophic lateral sclerosis (ALS) in its ongoing REFINE-ALS biomarker study. “ALS patient needs remain MTPA’s primary focus, so it was a priority to address the…

My husband Todd’s lung strength is weak from ALS. He’s gotten sick a few times in the last several years, and each time we wondered if he would pull through. It was scary, and it has caused us to calculate the risk of going out in public or receiving…

My ALS symptoms showed up in my feet and legs in 2010. Normally strong and coordinated from years of gymnastics and fitness classes, my lower limbs became weak and unreliable. That’s when my neurologist recommended I begin using a walker. To be precise, she meant I use a…

“You hold the key to love and fear All in your trembling hand Just one key unlocks them both It’s there at your command Come on people now Smile on your brother Everybody get together…