I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was…
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
“Put me in, coach, I’m ready to play today, Look at me, I can be center field.” John Fogerty’s homage to an aspiring baseball player is reminiscent of my pre-ALS relationship with nearly any game of skill. It was the rare…
As one of the moderators for the ALS News Today Forums, I get to welcome new members and learn a little bit about each person. Many of these new members are newly diagnosed patients. Besides wanting to learn as much as possible about ALS, they also tell me they…
“Run away, run away/ It’s the restless age/ Look away, look away/ You can turn the page/ … Take away, take away/ This house of mirrors/ Give away, give away/ All the souvenirs.” The other night, I awoke to a…
ALS is certainly a serious condition, and there is nothing funny about it, but many funny moments can happen. For my caregiver husband and me, holding on to a sense of humor is such an important part of our relationship that we can’t imagine letting a day go by without…
AC Immune and WuXi Biologics have announced a partnership to advance the development of an investigational antibody treatment that targets the protein TAR binding DNA protein 43 (TDP-43) for treating certain central nervous system (CNS) conditions, including amyotrophic lateral sclerosis (ALS). Having identified and developed the anti-TDP-43…
The campaign for a league-wide annual Lou Gehrig Day recently received a major boost as all 30 Major League Baseball (MLB) teams endorsed an effort to honor the late New York Yankees star first baseman and raise awareness of amyotrophic lateral sclerosis (ALS). Lou Gehrig Day has…
My office offers retreat, in that it only has wall décor we acquired before ALS upended our lives. Over my book case is a framed painting of Maine’s Bar Harbor that my husband, Todd, and I bought on our honeymoon. We purchased the piece from a local artist who then…
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is…
