How You Can Help
"ALS is a brutal disease. We need to help people with ALS and find a cure."
- Mark Robin
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Soul Shine also supports Team Gleason, an organization focused on technology, travel and quality of life for those living with ALS.
Steve Gleason will always be remembered for his blocked punt on the night the New Orleans Superdome reopened for the first time after Hurricane Katrina. Steve played for The New Orleans Saints from 2000-2008. In 2011, Steve was diagnosed with Amyotrophic Lateral Sclerosis (ALS), considered a terminal neuro-muscular disease. Steve is determined to inspire others by continuing to pursue life adventures despite his diagnosis, and has challenged the worlds of technology and science to identify their most promising developments toward new treatments and a cure.
Steve and his friends and family started Team Gleason to generate public awareness for ALS, raise funding to empower those with ALS to live a rewarding life, and ultimately find a cure.
Raising Gleason Steve Gleason opens up about fatherhood and ALS, what's it like raising kids in New Orleans, and his legacy for Nola Family.
““Until there is a medical cure for ALS, technology will be that cure. When a person is diagnosed with ALS they are expected to fade away quietly and die. This is not okay. The average life expectancy is two to five years after diagnosis. Along with thousands of others, I am determined to not fade away quietly. By communicating with other patients, it became clear to me that with a sense of purpose, the right support and the right technology, it is possible to live a meaningful life despite ALS.””
There are many organizations and researchers helping people with ALS as well as working to find relief from symptoms and ultimately, a cure. We would love to fund them all, but have selected several organizations in addition to Team Gleason that we encourage you to support.
ALS Therapy Development Institute is a non-profit biotech company working tirelessly to find a cure for ALS. Sarah Coglianese was the founder of the #whatwouldyougive campaign which raised funds for ALS TDI. In 2017, inspired by Amanda Watson’s friendship with Sarah and her own mother’s battle with the disease, Team Big Sky, a collaboration between The Watson and Robin families helped raise over $25,000 for the campaign. We encourage continued support of ALS TDI. Your contributions can be made in honor of Kit Watson, Mark Robin, Sarah Coglianese or anyone you know affected by this disease.
Read Sarah’s funny and inspirational blog
ALS Society, Evergreen Chapter, addresses the real-life needs of the approximately 100 ALS patients in the Northwest, including Mark. They loaned us the bed and shower chair which made Mark’s life more comfortable as well as an Eye Gaze communication system (all denied by insurance). Regional chapters are an important source of practical information and personal support to families like ours. Once we tapped into Evergreen, we felt understood and had immediate needs met. Please consider funding this great regional resource.
Dr. Merit Cudkowicz is a neurologist at Massachusetts General Hospital specializing in the care of PALS and is in active pursuit of new treatments. Her research is unique in that it focuses on a patient-centric approach. All PALS are eligible for the Phase 2 clinical trials of therapies that show promise. Supporting this research helps some PALS right now as well as encourages large pharmaceutical companies to come in and fund the final Phase 3 trials. We encourage support of Dr. Cudkowicz and her team of researchers.