Friends of Parkinson’s, patient support group, asking for donations
Nevada-based nonprofit looking to hire more professionals, grow programs
A decade after its establishment, the Friends of Parkinson’s — a group that supports, educates, and advocates for those living with the progressive neurodegenerative disorder — is asking for donations to allow it to grow and be of greater help.
Jamillah Ali-Rahman, who founded the Nevada-based nonprofit in 2014, said the organization specifically needs to expand its work in three areas: education, support and therapy, and information and referral.
Money raised will go toward hiring more professionals to assist patients and families coping with Parkinson’s disease, and into expanding marketing activities to heighten awareness of the disorder and of the organization itself. Ultimately, Ali-Rahman seeks to bring Friends of Parkinson’s programs and platforms to other states, establishing local chapters there.
Friends of Parkinson’s offerings include therapy, education, referrals
Programs currently available through the group include the Parkinson’s education series, which offers an annual medical symposium, as well as various support groups and activities like art and music therapy for patients and families. It also runs an information and referral center for those newly diagnosed with Parkinson’s.
Its art therapy program aims to help with physical challenges, and it includes a visual arts division called Art for Parkinsakes. Music and speech therapy programs are led by the Las Vegas Tremblers singing group, while physical therapy is offered through the program’s Dancing for the Health of It program.
Ali-Rahman said such activities help those with Parkinson’s to better enjoy life and manage the disease. They also can help patients in remaining active, particularly as research has shown that physical activity can slow Parkinson’s progression by up to 30%, she said.
“The reality of Parkinson’s disease is that today is as good as it’s ever going to be, so I am encouraging people to live in moments rather than days, weeks, months or years,” Ali-Rahman, whose background is organizational development and advocacy, said in a press release. “We seek to help people with [Parkinson’s] to become more mindful and help them live well right now.”
Friends of Parkinson’s also reaches out to the community through its yearly symposium into Parkinson’s research, innovation, and technology. Patients and caregivers who attend also learn about disease management skills.
On the first Saturday of every April, during Parkinson’s Awareness Month, the organization offers its Funny Bunny Race. The event, for walkers, runners, and “hoppers” Â in one mile and 5K races, is a light-hearted way to call attention to Parkinson’s. People also can participate virtually.
Friends of Parkinson’s’ information and referral center collaborates with partners in the wider community. Though the center’s database of contacts, it offers newly diagnosed patients referrals to appropriate healthcare professionals and other disease-related resources.
But first, the organization needs financial help in the form of donations from supporters and the greater public.
“I believe that, as an organization, we are only limited in our scope by the weight of our purse,” Ali-Rahman said. “Over the years, we’ve been able to do a lot more with few[er] resources than many well-funded organizations.
“Today, we’re at a point where we need people who are smarter than me to come in and support the organization. I’ve done a great deal with Friends of Parkinson’s, but now it’s got to grow,” she continued. “For it to grow, it needs new blood and expertise, which can only be achieved by raising funds.”