Press Release

Article

Young Onset Parkinson’s Network Joins National Movement Disorders Nonprofit PMD Alliance

FOR IMMEDIATE RELEASE

CONTACT:
Philip Giles, Senior Communications Manager
philip@pmdalliance.org | (206) 310-6766

September 18, 2024 (Phoenix, AZ)Young Onset Parkinson’s Network (YOPN), the only membership-based organization exclusively focused on supporting the needs of the Young Onset Parkinson’s Disease (YOPD) community, and Parkinson & Movement Disorder (PMD) Alliance, the national movement disorders nonprofit, announced today that they have joined forces to centralize lifetime support for those living with YOPD and their care partners. As part of PMD Alliance, YOPN will maintain its unique membership model and its sole focus on serving the needs of the YOPD community, while gaining access to the operational and organizational resources necessary to support its continued fast-paced growth.

YOPN was founded by Anna Grill, who was diagnosed with Young Onset Parkinson’s Disease (YOPD) at age 38. After spending 10 years hiding her illness professionally and personally, she saw the need for resources and a community that spoke to the specific struggles and privacy needs of those diagnosed with Parkinson’s at a young age. Under her leadership, YOPN quickly became the holistic, safe haven she envisioned – a free and private membership community where people with YOPD across the country can connect, learn, and live well, far beyond their diagnosis.

In its first three years, YOPN expanded to over 1,200 members across all 50 U.S. States and 38 countries. “Our growth has quickly outpaced our team’s bandwidth,” said Grill. “I felt a strong responsibility to the community to be proactive in securing the organization’s long-term sustainability.” The challenge was to find an organization that would maintain the private member portal that is essential to creating a safe and supportive space for its members, many of whom have not “gone public” with their diagnosis. Those with YOPD differ from the overall Parkinson’s community because they are in the prime of their lives—advancing in their careers, nurturing relationships, and growing their families. This life-altering diagnosis can be a shocking and challenging disruption to their future.

PMD Alliance has been a longtime partner of YOPN and is known in the movement disorders community for their collaborative approach—meeting community members where they are and proactively addressing their challenges. This culture meshed perfectly with YOPN’s needs for their community, and discussions revealed that the two organizations were well suited to fill each other's gaps in support.

Where YOPN was lacking in opportunities for care partners and education on late-stage PD concerns, PMD Alliance has a growing offering of educational resources and programming for both audiences, ensuring a centralized place of support as the disease progresses. Where PMD Alliance has a modest collection of resources for those with Young Onset, YOPN has a dynamic array of YOPD resources, education, and engaged members to inform future offerings.

“We were already partnering with YOPN to grow our YOPD programming, so welcoming them under our roof was a natural evolution of our relationship,” said PMD Alliance CEO, Andrea Merriam Crespo. “We’re excited to serve those with YOPD authentically and directly, with insights straight from them, expanding and amplifying YOPN’s efforts while preserving the safe, supportive space for their membership.”

Parkinson disease is the fastest growing neurological condition in the world, and Young Onset is the fastest growing subset, which makes expanding accessible, lifetime support for those living with a YOPD diagnosis and their loved ones all the more essential.

“We’re thrilled to be taking this next step in our growth with a trusted partner who knows and values our members and the community we’ve built,” said Grill. “Together, we have the opportunity to make sure our community continues to thrive and our members have access to the resources, support, and connections to live their best lives.”

About Young Onset Parkinson’s Network

Young Onset Parkinson’s Network (YOPN) is a nonprofit, 501(c)(3) educational and charitable organization for those diagnosed with Young Onset Parkinson’s Disease (YOPD) as well as the individuals related to and/or caring for those with the disease. The organization seeks to increase awareness of YOPD by providing information, resources, and services to help members strengthen their mind and body within a supportive community. Through its network, YOPN members have the holistic support needed not only to manage, but to thrive with this unexpected, early diagnosis. To learn more, visit www.yopnetwork.org.

About PMD Alliance

Parkinson & Movement Disorder Alliance is a national 501(c)3 nonprofit dedicated to providing opportunities for people to learn, live fully, and spark meaningful connections around them. All of PMD Alliance’s programming is informed and amplified by the passionate people they serve, including those with a movement disorder diagnosis, their loved ones, and their healthcare providers. Visit PMDAlliance.org to learn more.

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