MILFORD, Conn. — The summer of 2024 marks the 10th anniversary of the ALS Ice Bucket Challenge, which brought amyotrophic lateral sclerosis international awareness.
Since the challenge was started by Anthony Senerchia, Pat Quinn and Pete Frates in 2014, all of whom since passed away from the disease, the viral sensation has raised awareness and funds for ALS research and support services.
According to a release from ALS United Connecticut, the Ice Bucket Challenge has raised approximately $220 million worldwide since its debut. However, the nonprofit also points out that, despite the progress in research and policy reforms, a significant amount of work still must be done.
For the past 35 years, ALS United Connecticut has been committed to growing awareness and making an impact, the release said. The nonprofit offers local care, supports research and advocates for change daily.
“Over the past decade, our ability to provide care, support and resources has grown tremendously,” ALS United Connecticut Executive Director Jacky Rose said in the release. “I am so grateful for all those who participated in this amazing awareness campaign 10 years ago and to the compassionate and resilient community that continues to inspire hope for treatments and cures.”
The release noted that in 2014, ALS United Connecticut served 300 patients, and today, the nonprofit helps more than 400 people. 10 years ago, the nonprofit hosted 51 support group meetings, helping 294 attendees. Currently, ALS United Connecticut hosts 131 meetings attended by 1,160 people.
The nonprofit’s budget for Financial Care Assist Grants and the Accessible Transportation Program has also increased sixfold, according to the release. ALS United Connecticut works in conjunction with Hospital for Special Care in New Britain, which cares for more than 200 patients who are suffering from ALS.
“Our job as a multidisciplinary care center is truly enhanced and supported through our collaboration with the team at ALS United,” HFSC Medical Director Dr. Kevin Felice said in the release. “Our team and theirs provide a coordinated effort supporting the medical and daily needs of Connecticut patients and families dealing with the progressive neurodegenerative disease.”
The release acknowledged that there is still no cure for ALS, but over the course of the past decade, the HEALEY ALS Platform Trial began, as the FDA approved the drugs Radicava and Qalsody. Several new ALS-related genes were also identified.
According to the nonprofit, the HEALEY Trial has “really accelerated in recent years.”
Since beginning in 2020, the phase 2/3 trial includes over 70 enrolling sites, seven investigational drugs and currently hosts hundreds of participants, the release said, adding that additional regimens are ongoing in both start-up and planning stages.
Participants can also use the Expanded Access Program and stay on much needed drugs still in clinical trial stages, according to the release. At HFSC in New Britain, the HEALEY ALS Platform trial is led by Felice.
“This is a perpetual multi-centered and multi-regimen clinical trial evaluating the safety and efficacy of investigational drugs for patients with ALS,” Felice said in the release. “This is the first ALS platform trial, accelerating the path to new ALS therapies by testing multiple treatments at once, reducing the cost of research by 30%, decreasing the trial time by 50% and increasing patient participation by 67%.”
The nonprofit said that since the Platform Trial was launched in 2022, seven investigational drugs have been or are currently being tested in more than 50 hospitals across the country through the “collaboration with the HEALEY ALS Center at Massachusetts General Hospital in Boston.”
According to the release, under the leadership of Research Manager Honora Dalamagas, RN, MSN, the HEALEY Platform Trial at HFSC has been “one of the major recruitment sites in the United States.”
At the end of July, those affiliated with ALS United Connecticut will celebrate the 10th anniversary of the Ice Bucket Challenge by going to Lou Gehrig Field in Milford and grabbing buckets full of ice water. Supporters are invited to participate in their own Ice Bucket Challenge and use the hashtag #ALSUnitedCT.
After the Ice Bucket Challenge is completed, ALS United Connecticut will resume its rigorous attempts to tackle the challenge that is ALS, as the nonprofit continues to make a difference.
For more information about ALS United Connecticut, one can email info@alsunitedct.org or call 203-874-5050.
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Dalton Zbierski is a digital content producer and writer at FOX61 News. He can be reached at dzbierski@FOX61.com.
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