NEW ORLEANS & BOSTON–(BUSINESS WIRE)–Team Gleason, a leading foundation for ALS patient support, is collaborating with Boston Children’s Hospital’s ALS Augmentative Communication Program, which provides expert guidance and support for proactive voice preservation through voice banking, BCH Message Banking™ Protocol and “double dipping” for people with ALS. Their gift of $750,000 will help expand clinical activities, which may include training of others in this work, expert support, counseling and guidance through the voice preservation process using tele-video services.
While people with ALS and their families have been sheltering in place along with much of the country during COVID-19, the progressive symptoms of ALS do not stop. Patients may decline in abilities over the course of a shelter-in-place order, and waiting for clinics to return to normal may make voice preservation unavailable as an option. ALS does not stop with COVID, and neither did Team Gleason or Boston Children’s Hospital.
People with ALS frequently approached the Boston Children’s ALS Augmentative Communication Program seeking clinical help and also approached Team Gleason for the tools and software to maximize that clinical support. Nationwide, clinics are often unaware of options for voice preservation and cannot support people with ALS who are within the window of opportunity. This collaboration is a commitment of both organizations to use their strengths to meet the needs of people with ALS.
“I believe that until there is a medical cure, technology will be that cure. Stated another way, most of what ALS takes away, technology can give back,” says Steve Gleason. He added, “Losing my voice was by far one of the most difficult things to process. Having ‘banked’ my physical voice made it dramatically easier to adjust for me and for my family. I am proud Team Gleason is supporting Boston Children’s Hospital and the work of John Costello, Director of BCH’s ALS Augmentative Communication Program, to provide superior voice messaging and voice banking options.”
“This investment will provide additional, crucial support to grow the program and serve more people with ALS. Together, we are offering services to anyone, anywhere, and educating care givers on the importance of voice preservation and technology,” said John Costello. “Team Gleason is a tremendous advocate for the advancement of technology and tools that allow people with ALS to stay engaged in life as this terrible disease progresses. We will continue to grow the program and offer support for voice preservation to anyone who needs us.”
To learn more and apply for Team Gleason’s support, visit www.teamgleason.org/voicebanking
About Team Gleason
Team Gleason Foundation was founded by former New Orleans Saints player, Steve Gleason, after his diagnosis with Amyotrophic Lateral Sclerosis (ALS) in 2011. Team Gleason’s mission is to improve life for people living with ALS by delivering innovative technology and equipment, as well as providing and empowering an improved life experience. For more information, please visit www.TeamGleason.org.
About Boston Children’s Hospital
Boston Children’s Hospital is ranked the #1 children’s hospital in the nation by U.S. News & World Report and is the primary pediatric teaching affiliate of Harvard Medical School. Home to the world’s largest research enterprise based at a pediatric medical center, its discoveries have benefited both children and adults since 1869. Today, 3,000 researchers and scientific staff, including 9 members of the National Academy of Sciences, 21 members of the National Academy of Medicine and 12 Howard Hughes Medical Investigators comprise Boston Children’s research community. Founded as a 20-bed hospital for children, Boston Children’s is now a 415-bed comprehensive center for pediatric and adolescent health care. For more, visit our Discoveries blog and follow us on social media @BostonChildrens, @BCH_Innovation, Facebook and YouTube.
The ALS Augmentative Communication Program at Boston Children’s has provided comprehensive augmentative communication assessment and intervention services to hundreds of people diagnosed with ALS, while pioneering innovative clinical and technology approaches in collaboration with national and international leaders in the augmentative communication and assistive technology industry. For more, visit our Vector and Thriving blogs and follow us on social media @BostonChildrens, @BCH_Innovation, Facebook and YouTube.