June 21st is Global ALS/MND Awareness Day.

 

In the U.S., every 90 minutes someone is diagnosed with ALS and every 90 minutes someone with ALS dies.

 

Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease and outside the US as Motor Neuron Disease (MND) or Charcot’s Disease, is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function.

  • The motor neurons control the movement of various voluntary muscles including the diaphragm. Associated with the loss of the ability of motor neurons to function in ALS, the various muscles cells waste away (atrophy), resulting in increased muscle weakness. Ultimately, accumulated loss of motor neurons makes it impossible for voluntary control of normal muscle function.

Symptoms of ALS can include twitching and cramping of muscles (called fasciculation), stiffness in muscles (spasticity), increasing loss of motor control in hands and arms and legs, weakness and fatigue, slurred or thick speech and difficulty breathing or swallowing.

  • In most cases, ALS patients do not typically experience significantly impaired sensory neural functioning, intellectual reasoning, vision or hearing. Eye and bladder muscles, along with sexual function and drive, are not normally affected.

ALS is diagnosed using a variety of tests and examinations, including laboratory tests, muscle and nerve biopsy, spinal tap, X-rays, MRI’s and electrodiagnostic evaluation of axon function.

Team Gleason is empowering people with ALS to live purposeful lives.

Team Gleason is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible.

Since Team Gleason’s inception, we have made a significant impact on the lives of countless people living with ALS. While the organization has spent millions of dollars providing equipment, technology, services, care, and life-changing adventures, the impact goes well beyond our mission.

In 2015, the Steve Gleason Act was signed into law, ensuring access to all people who need assistive communication devices. In 2018, the Steve Gleason Enduring Voices Act was passed to replace the original law, which made the devices eligible for Medicaid and Medicare reimbursement.

In one of Team Gleason’s first meetings, Steve declared, “There Will Be No White Flags.” He meant it and so do we.

Steve and Team Gleason continue to push the boundaries of what is possible in living with ALS. Whether it be partnering with the world’s largest tech companies, challenging legislation, innovating for new technology or creating life-changing experiences, the group strives to find solutions where others see only problems.

San Diego Zoo: Private Tour

San Diego Zoo: Private Tour

Sem and Luda road trip from Miami, through the Everglades, all the way to the Florida Keys in an accessible van!