When Wendy Hendrickson was diagnosed with ALS she found that, while her friends and family were very supportive, there was both a lack of information about ALS and a lot of misinformation. She, along with her husband Chaz, decided to take on this need for more education and training. The knowledge gap among first responders and hospital emergency staff needed to be addressed immediately.
A Critical Knowledge Gap
When Mr. Smith fell off a curb while trying to get into his car, his wife called 911 to receive help. Unfortunately, the emergency responders were not familiar with ALS and provided treatment that was not appropriate for someone with a neuromuscular disease. Due to lack of training, the knowledge gap and the outdated protocols, he didn’t make it to the hospital. His death was preventable if just one person would have listened to the caregiver or have had the proper training. Mr. Smith fought every day to survive another day with ALS, yet he died in 4 minutes unnecessarily.
His story is just one of hundreds of similar stories. Even one story about this, is one too many.
Four Minutes.
That’s how quickly a person with ALS can die when emergency first responders lack the knowledge of care specific to this disease.
Our goals towards saving lives.
Wendy's Wish 911 raises awareness and shines a light on the challenges of individuals living with ALS and other neurological conditions and the importance of educating all 4 departments of first responders – 911 Dispatchers, EMS, Police and Fire Departments.
There is a critical need for updating policies and protocols currently in place to reflect the real time needs of individuals living with ALS and other neurological conditions.
To make all first responders aware of the greatest resource they have in an emergency situation –– our CAREGIVERS! They are with us 24/7 and know everything about our condition including our doctors’ numbers, preferred hospitals with well-educated ALS doctors, our medications, the equipment we use to keep us alive, how to transport us and with what devices. Most times, unfortunately, caregivers are not listened to and pushed away as first responders and emergency room staff have their own training and protocols. The very best tools available to first responders and emergency staff are our caregivers. Use them!
How we will affect change.
Meet and Begin the Conversation: Encourage open communication between first responders, hospital emergency staff and individuals living with ALS and other neurological conditions.
Provide information and Instruction: Provide first responders and hospital emergency staff with specific information about ALS and other neurological conditions.
Bridge the Knowledge Gap: By educating first responders and hospital emergency staff, the program helps ensure they are better prepared to handle emergencies involving individuals living with ALS and other neurological conditions.
Undertake a Fund Raising Campaign: In addition to the educational component of Wendy’s Wish 911 Program, a fund-raising campaign will help offset costs for the training and raise funds to provide “My ID” bracelets, stickers and resource materials for individuals living with ALS and other neurological conditions, their caregivers and families.
Train and Share Resources and Programs: Make first responders and emergency room personnel aware of products like “MyID” bracelets and stickers that will enable them to have immediate, real time and crucial medical information available simply by scanning a QR code, unique to each individual living with ALS and other neurological conditions. In addition, we will share and train with a current program, The Yellow Dot Program. It has been in effect for many years and yet first responders are unaware of this program. In addition to many other free resources available to alert and assist first responders that the patient being treated is a person living with ALS and other neurological conditions
Engage with the Community: Wendy’s Wish 911 Program will foster a greater sense of community by bringing together individuals with ALS, and other neurological conditions, caregivers, first responders, hospital emergency staff, and other community members. We seek to encourage open conversations and collaboration thereby bridging the knowledge gap.
Save Lives: First responders and hospital emergency staff can provide more informed and effective care, leading to safer outcomes for individuals with these conditions.