The Bob & Renee Parsons Foundation has continued its support of the Muhammad Ali Parkinson Center at Barrow Neurological Institute with a $1 million gift to launch the Legacy Caregiver Support Program. This will be an extension of the Lonnie and Muhammad Ali Legacy Care Program, which was created through a $4 million grant from The Bob & Renee Parsons Foundation in 2017. The Legacy Caregiver Support Program aims to expand resources for caregivers of advanced Parkinson’s patients to significantly decrease burden and burnout.
“The level of care at the Muhammad Ali Parkinson Center at Barrow Neurological Institute is second to none,” said Bob Parsons, Co-Founder, The Bob & Renee Parsons Foundation. “The new Legacy Caregiver Support Program will further leverage Barrow’s top notch service model by extending support and relief to family members who quietly bear so much of the burden.”
Nearly one million Americans are living with Parkinson’s disease. Much of the financial and emotional burden of Parkinson’s falls heavily on caregivers, many of whom are a loved one of the patient. As the disease progresses, caregivers begin to face significant responsibilities and challenges—their loved one may have substantial mobility impairments, difficulty eating and dressing, and trouble with communication. Through the Legacy Caregiver Support Program, Barrow Parkinson’s specialists will be able to provide caregivers with additional resources to handle the mental and emotional toll living with the disease takes. They will also be able to track and measure their success with the program, enabling Barrow to take this model of care to a national level.
“As patients reach the advanced stages of Parkinson’s, the burden on caregivers grows exponentially. I can personally attest to this as Muhammad Ali’s wife and caregiver throughout his battle with Parkinson’s,” said Lonnie Ali. “With the support of The Bob & Renee Parsons Foundation, Barrow can now provide the loved ones of advanced Parkinson’s patients with the respite they so desperately need to take care of their own physical and emotional health.”
By implementing comprehensive interventions to reduce caregiver burden, the Legacy Caregiver Support Program will improve the quality of life of both patients and their loved ones. In addition to strengthening existing support services, which include educational workshops, virtual recreation classes, support groups, and Hispanic outreach, the Legacy Caregiver Support Program will develop and implement Movement Cafes. These allow caregivers to receive much-needed respite by participating in support groups and interacting with others in similar situations while their loved one engages in safe, stimulating activities and physical therapy. The Movement Cafes will be in the East Valley, West Valley, and Central Phoenix, and pilot programs for Legacy Care patients are set to begin in early 2024. The Program will also take steps to better understand and address the needs of caregivers by developing a Legacy Caregiver Support Program needs survey, as well as an online caregiver training series for both care professionals in the community and patients’ loved ones.
“We know burnout is a reality for thousands of Americans caring for their loved ones with Parkinson’s,” said Renee Parsons, Co-Founder, The Bob & Renee Parsons Foundation. “We’re honored to partner with the Muhammad Ali Parkinson Center to create a new program where caregivers are afforded a moment of respite and an opportunity to tend to their own personal needs.”
“This next phase of the Lonnie and Muhammad Ali Legacy Care Program will allow Barrow to not only provide advanced care for Parkinson’s patients, but also critical support services to their caregivers and loved ones,” said Katie Cobb, President of Barrow Neurological Foundation. “We are grateful to The Bob & Renee Parsons Foundation for helping Barrow continue its legacy of offering comprehensive, world-class care.”
The Muhammad Ali Parkinson Center at Barrow Neurological Institute is the nation’s most comprehensive center for Parkinson’s disease and the only Parkinson’s Foundation Center of Excellence in the Southwest. In 2022, the Center celebrated the 25th anniversary of its naming by Muhammad Ali. The addition of the Legacy Caregiver Support Program to the Lonnie and Muhammad Ali Legacy Care Program marks another significant step in the fight to change the care and treatment of Parkinson’s disease.
