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Missouri tackles ALS, Lou Gehrig’s Disease


The State of Missouri took a big step forward in supporting patients with ALS (commonly referred to as “Lou Gehrig’s Disease”) when the Missouri legislature approved state funding for respite care, opening the door for a federally-funded program in the state. 

Respite care helps in several ways. It allows for reimbursements to be made to caregivers of patients afflicted with ALS so that they may devote more of their time and finances to caring for that person, or it can provide training to caregivers on how to care for patients with ALS. Respite has been shown to provide family caregivers with relief necessary to maintain their own health, bolster family stability, keep marriages intact, and avoid or delay more costly nursing home placements.   

Senator Justin Brown (R-Rolla) made the amendment to allot funds for respite care for families who are battling an ALS diagnosis in the Missouri budget. Speaking on the success, Brown said, “I am proud that we can help patients with ALS and their families even in this small way. ALS is a terrible disease for which there is no cure. Organizations such as the ALS Association have been advocating for their patients for years, and Missouri has taken a big first step towards helping patients with ALS and their families have the adequate care they need.”

Maureen Barber Hill, President and CEO of the ALS Association St. Louis Regional Chapter, praised the recent turn of events: “For years, the Chapter has been working on behalf of those diagnosed with ALS to develop a system within the state for federally funded respite care. We are thankful that Missouri is showing its support for patients with ALS and caregivers.”  

Since its inception in 1984, the ALS Association St. Louis Regional Chapter has provided 55,313 hours of respite to ALS families. This is one of their most sought-after programs. Now, the state is offering new resources for further care for these families.

“We’re looking forward to working with the Department of Health and Senior Services to disburse this money in the best way for patients with ALS and their families,” Barber Hill said. Upon signing of the budget by Governor Mike Parson, next steps will be made on how to disburse the funds. 

In addition to allotting funds for patients with ALS and their families, the Missouri Governor has taken several steps to highlight the realities of ALS. Earlier this month, Governor Mike Parson signed a proclamation naming the month of May as “ALS Awareness Month.” Missourians are encouraged to learn more about ALS and to find ways to help address the difficulties of coping with ALS. 

“The ALS Association encourages people to recognize May as ALS Awareness Month and to help raise awareness of what ALS is, its symptoms, and what can be done about it,” said Barber Hill. “By marking this month as ALS Awareness Month, we hope that more Missourians will be given insight into the realities of ALS, which goes a long way in our battle against ALS.”

Senator Brown applauded the Governor’s proclamation, “Funding goes a long way, but we need the people of Missouri to also understand the hurdles ahead in fighting ALS.”