VickiMy family and friends have been involved with the Walk to Defeat ALS for nearly 20 years. Signs like these, “In Celebration Of” and “In Memory Of” represent the hundreds of people in our area who are living with or have passed from ALS, line the entire mile-long walk. Many of the “walkers” are in wheelchairs, while others wait at the finish line to welcome their supporters.
The walk site is always very festive with music, and games for the children. There are free food stands, t-shirts, and all the other things you find at fundraising walks. What you do not find is a survivor’s tent or folks wearing survival banners. No one survives ALS. Yes, some victims, like my son Bryan have extremely slow disease progression. For some unknown reason, he has beat the odds and has lived much longer than the predicted 2 years.
There is no treatment for ALS. Yes, there are many drugs in the trial stage, but when the general life expectancy is limited, we are not able to wait years for trials and the FDA.
This year a spark of hope exists. Bryan is on a new drug called Relyviro. It is not a cure or a treatment but it does possibly delay progression. There are many side effects and some pals ( ALS patients) are unable to use it. Thankfully, Bryan can tolerate it.
Your contributions to https://www.als.org/mid-america help all the pals and cals (caregivers of als patients) in so many ways other than research. Wichita now has an ALS Clinic with Physicians that specialize in this disease. In years past, we had the 6 hour round trip journey to KC to visit KUMed. That often required an overnight stay which is very difficult when pals depend on so much equipment for health support. Each family receives a $1,000. Grant to use on meds, equipment or caregiving. This year they are a offering a Smart Home Program to families in this service area