Parkinson Care Partner Community: Get Involved!

There are many ways for people with PD, their friends, and their family to get involved in the Parkinson’s (PD) community. National, regional, and local Parkinson’s organizations offer ways to seek support or get involved in advocacy, research, fundraising, and other awareness activities. Caregivers and care partners can benefit from getting involved, taking advantage of broad access to information and identification of helpful resources. Many of the organizations can provide opportunities for PD caregivers to connect with each other. Caregivers need their own support and resources.^1,2,3

Parkinson’s Disease Awareness Month

April is Parkinson’s Disease Awareness Month, and many organizations offer activities for individual and community engagement.

• The Parkinson’s Foundation engages the global Parkinson’s community to make lives better for people with PD and those that care for them. They offer programming and to start a conversation. They have an online toolkit that offers ideas for raising awareness through social media and in local communities.
• The Michael J. Fox Foundation for Parkinson’s Research hosts many activities to engage the search for better treatments and a Parkinson's cure by generating support for research.
• Parkinsondisease.net highlights new information and brings awareness to what Parkinson’s means to its community members and to share it within the community and beyond.

Fundraising

Parkinson’s research is key to improving treatments and searching for the cause or developing a cure for PD. There are many opportunities to help raise funds for PD research.

• The Michael J. Fox Foundation for Parkinson’s for Parkinson’s Research has Team Fox, a grassroots community fundraising program that enables individuals to create their own unique fundraiser or participate in other Team Fox fundraisers. They also sponsor the Fox Trot, a 5k-run/walk event hosted in cities across the country.
• Parkinson’s Foundation hosts Moving Day; fundraising walks in cities all over the country. Parkinson’s Champions are do-it-yourself fundraising events organized by individuals and include donating birthday gifts, fish frys, and endurance events, like marathons.
• American Parkinson Disease Association provides a number of local grassroots fundraising events, like walks and other donation activities.⁴
• The Parkinson Alliance hosts the Team Parkinson and the Unity Walk, events to raise awareness and funds for research to find a cure for Parkinson's.⁵

Find support - online and locally

Numerous resources are available to assist caregivers in:

• Learning more about Parkinson’s disease
• Identifying resources to improve life for people with Parkinson’s
• Self-care for caregivers
• Sharing ideas and concerns in support groups
• Legal, health, and social guides for caregivers.

Parkinson’s resources for caregivers

Parkinson’s Foundation resources

• We’re Here for Caregivers: Top Caregiver Resources
• Local community organizations
• Parkinson's Foundation Helpline: 1.800.4PD.INFO
• Other resources that can be found on the Parkinson's Foundation website
• Caring and Coping is a free book with caregiving tips, stories and tool to promote a productive caregiving experience.

Michael J. Fox Foundation for Parkinson’s Research resources

• Advice for loved ones and caregivers
• Parkinson’s disease information for caregivers
• Online Communities Help Caregivers Find Support, Save Time
• Understanding Parkinson’s Books and Resources.

Family Caregiver Alliance directory of support groups

• General information for caregivers is included on the Family Caregiver Alliance website including a geographic directory.⁶