Author Archives: Hawken Miller

Note: This story was updated Jan. 25, 2022, to clarify that Target ALS has raised $90 million since its inception in 2010. Amyotrophic lateral sclerosis (ALS) has been a part of Daniel Doctoroff’s life for more than two decades. His father, Martin Doctoroff, died of the disease in 2002, and…

When Leah Stavenhagen was 27, she was living in Paris and traveling through Europe. But an amyotrophic lateral sclerosis (ALS) diagnosis forced her to give up her job as a consultant with Ernst & Young and dashed her dreams of continuing to work abroad. At the time, she seemed…

Once a first-round draft pick for the Atlanta Falcons, Tim Green now is battling another opponent — amyotrophic lateral sclerosis (ALS). The disease has left him unable to walk, speak, eat, drink, or breathe on his own, but he hasn’t let it obscure his positive outlook on life. “I…

BioNews Insights is launching a survey, in collaboration with ALS News Today, with the goal of understanding how different aspects of this disease affect an individual’s quality of life. The survey, which is expected to take about 15 minutes to complete, opens with WHOQOL-100, a set of questions developed by…

Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…

People affected by amyotrophic lateral sclerosis (ALS) have come up with plenty of creative ways to raise money for research and care — whether it’s the ALS Ice Bucket Challenge, re-creating Olympic events, or Major League Baseball’s designation of June 2 as Lou Gehrig Day. Joe…

A gay 39-year-old entrepreneur from Mexico and a retired Jewish football player-turned-bank-CEO in the early stages of amyotrophic lateral sclerosis (ALS) come from different places and are in different stages of life. But through art, Octavio Molina and Ken Brenner have become fast friends, discussing life at its deepest…

At face value, the purpose of the National Amyotrophic Lateral Sclerosis (ALS) Registry seems quite straightforward: collecting data on the U.S. population with ALS. But there’s a lot more to it. The registry, funded by the…

National Amyotrophic Lateral Sclerosis Awareness Month, recognized in the U.S. each May since 1992, continues to unite patients, family, friends, and advocacy groups around shared goals of raising public awareness and research support. This year’s efforts continue to recognize and support those living with…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…