Chris Rosati, who was diagnosed with amyotrophic lateral sclerosis (ALS) in November 2010, challenged the ALS Association to publicly declare that a cure for the disease will be found in the next six years. In an emotional video addressed to the association’s CEO Barbara Newhouse, Mr. Rosati explained that he, his family and others like him are in “real trouble,” as he asked for a more official action.
The video titled “Real Trouble: A Challenge to End ALS” was recently posted on the website by2021.org alongside a letter titled “A Challenge to the ALS Association.” Rosati believes that despite all commitment, passion and hope being dedicated to find a cure for ALS, greater action is needed, as he decided to take the first step towards that official target.
“I challenge the ALS Association to tell me, tell the families who suffer now, the ones who mourn, the ones who donate and the researchers who labor – tell the world you are setting a deadline,” said the patient, as he explained that the diagnosis and the disease scares him and his family, but he believes that fear can be used to help advance the fight against this malignancy.
“I’ve been fortunate to have part of my story told,” explained Rosati, who has been featured on CBS Evening News, Huffington Post and other media, and has been advocating for a cure for ALS. “I’m “the Krispy Kreme guy” or “the Butterfly Effect guy”. But I’m also a father, a husband, and a friend. And I’m dying – a reality which makes me an unapologetic dreamer and a fearless believer.”
In the letter, Rosati explains why he believes it is so important for the association to publicly declare that it has 2021 as a target to find a cure for ALS. He refers to the initiative Man on the Moon launched by the JFK Administration, the increased awareness and funding granted last year to the disease as a consequence of the Ice Bucket Challenge, as well as scientific advancements made by researchers.
“I’m issuing this challenge because we need it. All of us,” explained Rosati. “This is more than an ALS challenge. It could be the story, the seemingly impossible objective that we can all rally behind, that can unite us – our land on the moon moment.” The patient added that there is currently more awareness, money and knowledge than ever before, but there is a lack of courage to believe in the cure.
“I guarantee you, saying that publicly, It will change the game,” stated Rosati. In order to help the ALS Association accomplish the proposed goal, the patient suggests that other patients, leading researchers, pharmaceutical companies, elected officials, government agencies and nonprofits gather in a room to discuss the problem.