PLEASE JOIN BOBBY K's BRIGADE AT POINT STATE PARK 9/14/24
Bobby K's Brigade has participated in the walk since 2019. We have been blessed by your support and contributions and have raised well over $100,000! Thank you so very much!
Each year, our robust team has been comprised of ~ 50 very supportive family, friends, coworkers, neighbors and colleagues that have graciously given their time and support to help us raise ~ $30,000 annually. We are hoping you will join us again this year and would like to increase our number of team members as well as the amount of money that we raise for the Chapter. This year, the Walk will be held once again at Point State Park. It is a leisure 0.7 mile venture around the park. The venue is beautiful and the emotion and camaraderie is palpable.
We walk for my brother Bob who began developing difficulty walking, leg weakness, stiffness and spasticity ~ 2018. After many visits to multiple hospitals, numerous diagnostic studies and lab testing the diagnosis was received. The urgent question of 'How do we navigate this?' was answered when Bob was linked with the Chapter and their amazing, selfless team members who actually really take the time to know each patient and their family members. Immediate needs were met quickly with equipment from the loan closet, ie: a walker and then the light rider wheelchair that he uses today that allows him to maintain independence at no cost to him. Home modifications were thoughtfully done with grant assistance. The Chapter also provides grants to help with respite care as well as multidisciplinary ALS clinics and research. Eighty percent (80%) of Chapter funding is generated by events like this walk. Remaining funds come from government grants.
My brother is a courageous man. Living with this disease is not easy mentally, physically or emotionally. Through it all, he continues to work full time for Peoples- who is very supportive of him- and they also donate very generously to the ALS Association via Bobby K's Brigade. Bob also helps take care of household chores and cooking. 'ALS Walk time' is a very important time for Bob. It brings him hope and makes him keenly aware that he is not alone and that people truly do care. He is also astutely aware that the money made during the walk is instrumental in finding a treatment or a cure.
Our Chapter currently serves 261 families and 70 are new patients. Sadly, we have lost 96 patients this past year. You may think $1.3 million on programs and services is a lot of money for so few families. However, to put this into perspective, the annual out-of-pocket cost for caring for a person with ALS is $250,000 per year. ALS is an expensive disease.
We walk for Bob and for others who are living with ALS--to bring help and hope. To change he statistics. To ensure that no one ever hears the words "You Have ALS" again. We also walk in memory of those who have come before him.-And the key to a cure begins with all of us . Please consider walking with me or sponsoring me. With your help, we will be able to make a difference in the lives of people affected by this horrific disease.
Please follow the links at the bottom of the page to register to walk or to donate.
Thank you so very much!
WHY WE NEED YOUR HELP
- Every 90 minutes, someone is diagnosed with #ALS. In the same period of time, someone will pass away from ALS.
- ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The disease is 100% fatal.
- ALS takes away the ability to walk, dress, write, speak, swallow, and breathe. But, with every scientific advance, we get closer to the cure.
Join me to help change these statistics by making a donation to support my Walk to Defeat ALS efforts.