Sophia Harding is a Phone Friend Volunteer with The ALS Association Florida Chapter. She volunteers in honor of her great-grandfather who was the first chairman of The ALS Association.
Recent changes to Medicare will enable people with ALS to receive services from speech language pathologists via telehealth through the end of the COVID-19 pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
This week the Lightning Foundation and the Lightning Community Heroes program honored Gary Dassatti for being a courageous, selfless, and noble leader who has championed the fight against ALS
May is ALS Awareness Month, and The ALS Association Alabama Chapter is creating awareness and understanding of this devastating disease by bringing attention to the needs of people across the state who are living with ALS.
The Orlando CEO Soak, presented by AdventHealth, is a "grown up" version of the Ice Bucket Challenge engaging corporate leadership to get soaked while raising money to benefit The ALS Association Florida Chapter. Orlando executive leaders that commit to being a “Soakee” will raise awareness and funds for ALS patient care, research and advocacy – providing critical support to ALS families. It will all culminate at an Orlando fountain where the "Soakee" will be soaked in their work attire.
ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The disease robs people of the ability to walk, talk and even blink an eye. It traps them inside a body they no longer can control and ultimately prevents them from breathing as it takes their life. People with ALS lose the power to use their legs, hold someone close, and say, “I love you,” before their bodies gradually shut down. . From onset to diagnosis, life expectancy is 2 – 5 years.
Dr. Jan Veldink is receiving the award in recognition of his contribution to ALS epidemiology and genetics which have led to important novel discoveries including several new ALS risk genes. He has established a research line on ALS genetics, epidemiology and transcriptomics and has a proven track record in both array-based and sequencing technology. In addition, he has established an international biobanking register and patient database specifically for ALS, which is essential to be able to carry out Project MinE.
