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See what’s new with the Young Onset Parkinson’s Network!

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  • 09/17/2024 2:37 PM | Anonymous

    Phoenix, AZ., - September 18, 2024 

    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 offeringof 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 ourYOPD programming, so welcoming them under our roofwas 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.  or our Blog with the full story

    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 ofPMD 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. 

  • 04/02/2024 11:34 AM | Anonymous

    Vienna, Va.,  April 2, 2024

    Exciting News for YOPN Members!

    We're thrilled to announce the relaunch of our popular podcast, Living Well Starts HereSM, as a video podcast (vodcast) format!  Debuting on Tuesday, April 9, this exciting new chapter brings fresh faces and a dynamic, visual experience to our YOPN community.

    Why the Change?

    We're always looking for ways to better serve you, our YOPN members.  The vodcast format allows for a more engaging and interactive experience. You'll be able to see the passion and expertise of our new co-hosts as they delve into topics relevant to the Young Onset Parkinson's community.

    Get Ready to Meet Our New Co-Hosts!

    Living Well Starts Here boasts a fresh lineup of four rotating co-hosts who are ready to connect with you. Stay tuned for more information about these inspiring individuals!

    How to Tune In:

    Catch Living Well Starts HereSM  on our website or subscribe wherever you listen to your podcasts.

    We are ecstatic to share this new chapter with you!

  • 02/19/2024 2:31 PM | Anonymous

    Vienna, Va., February 19, 2024

    Young Onset Parkinson's Network (YOPN), a non-profit organization dedicated to supporting individuals facing young-onset Parkinson's disease, proudly announces the launch of in-person events, YOPN LIVE!. This new initiative aims to bring the vibrant online YOPN community together in person through a series of local events throughout the United States.

    YOPN Live is currently available in seven cities, including Washington DC, Rochester NY, and Los Angeles CA, with plans for expansion globally in the near future. The localized, in-person social groups are designed to foster a sense of connection, understanding, and support among YOPN members. 

    Key Highlights of YOPN Live

    • Local Social Groups: YOPN Live are social groups comprised of YOPN members who come together regularly. The frequency of meetings will be determined by each group, allowing for flexibility and responsiveness to the unique needs of each community.

    • Member-Run and Funded: These local groups are not only supported by YOPN but are also entirely run and funded by their members. This model empowers individuals to actively contribute to the development and sustainability of their local YOPN Live community.

    • Diverse Events: YOPN Live events encompass a wide range of activities, from casual gatherings like happy hours, cocktails, brunches, and dinners to family-friendly events and group fitness activities such as walks, hikes, and bike rides. This diverse array of options, dictated by each group, ensures that there is something for everyone, fostering a sense of inclusivity and camaraderie.

    An Extension of YOPN

    YOPN Live is an extension of the existing YOPN online community, meaning attendees must be registered members to participate in these in-person gatherings. This ensures a cohesive and supportive environment for individuals affected by young-onset Parkinson's disease. YOPN membership is open to all individuals impacted by young-onset Parkinson's disease, including care partners, friends, and family. 

    About Young Onset Parkinson’s Network (YOPN)

    Young Onset Parkinson’s Network (YOPN) is a nonprofit, 501(c)(3) educational and charitable member organization dedicated to helping those diagnosed with Young Onset Parkinson’s Disease (YOPD), the fastest growing segment of Parkinson’s Disease, live their best lives. Through our network, members connect, learn and engage with others who understand what they are experiencing. They gain access to programs and resources designed specifically for those living with or caring for those with the disease. With a growing membership worldwide, our members become part of a safe and supportive community to help navigate this life-altering diagnosis and chart their own path forward to live well and thrive. For more information, please visit http://yopnetwork.org.

  • 09/26/2023 2:02 PM | Anonymous

    Vienna, Va., September 26, 2023 - Young Onset Parkinson’s Network (YOPN), the only member-based organization exclusively focused on supporting the needs of the Young Onset Parkinson’s Disease (YOPD) community, announced today that it has been awarded a one-time, charitable contribution from Coverys Community Healthcare Foundation (CCHF).  Funding from this donation will help support YOPN’s Resource Navigator program designed to help YOPN members access mental wellbeing resources and support.  

    “We are honored to be selected as a recipient by CCHF’s Charitable Giving Committee and are grateful that they recognize the value of our program,” says YOPN Founder Anna Grill.  “We rely on grants, sponsorships and donations to maintain a no-cost membership. With CCHF’s generous support we can expand the program beyond its initial pilot to help members manage the mental health and well-being aspects of dealing with a diagnosis of Young Onset Parkinson’s Disease.”

    The Coverys Community Healthcare Foundation, Inc. provides grant funding and donations to organizations and innovative programs that improve patient care and safety, promote healthy lifestyles, and support individuals and organizations providing healthcare services. The development of the Foundation exemplifies Coverys’ dedication to being an affirmative and active corporate citizen in the healthcare community and the communities in which it operates.

    Individuals with YOPD are diagnosed during the most productive years of their lives. They live longer with the disease and are at increased risk for non-motor symptoms of Parkinson’s Disease. Depression is one of the most frequent non-motor symptoms of Parkinson’s Disease. According to a 2022 study from The National Center for Biotechnology Information and the National Institutes of Health, risk of depression for people with Parkinson’s Disease is considered four times higher than the general population. YOPN’s Resource Navigator Program was developed to help its more than 800 members access the mental health resources and support they need to live well and thrive.

    About Young Onset Parkinson’s Network (YOPN)

    Young Onset Parkinson’s Network 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 has quickly become the first stop for all things YOPD and 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.

  • 06/14/2023 11:21 AM | Anonymous

    Vienna, Va., June 14, 2023 – Young Onset Parkinson’s Network (YOPN) announced today it has earned the Gold Seal of Transparency Rating from Candid (formerly

     GuideStar), the world’s largest source of information on nonprofit organizations. This rating puts YOPN among the top 1% of tax-exempt organizations registered with the IRS which have earned a Gold Candid Seal of Transparency.

    The Gold Seal of Transparency is a symbol of nonprofit transparency, accountability, and inclusivity. Organizations must share financial details and information about their leadership as well as demonstrate adherence to industry best practices for ensuring philanthropic dollars are spent responsibly and efficiently.

    “Today, more than ever, transparency is critical to earning donor trust,” says YOPN Founder Anna Grill.  “Achieving this rating demonstrates to both funders and our members YOPN’s commitment to openly sharing information about our organization’s mission, goals, operations, and achievements to ensure those with Young Onset Parkinson’s Disease (YOPD) have the holistic support they need to live well and thrive far beyond their diagnosis.”

    YOPN has established itself as a critical resource for people living with YOPD and their care partners. Individuals with YOPD are diagnosed during the most productive years of their lives, live longer with the disease, and are at increased risk for non-motor symptoms of Parkinson’s Disease. The organization partners with leading industry experts as well as other Parkinson’s related organizations and quickly has become the first stop for all things YOPD.

    Earning the Gold Seal of Transparency gives YOPN donors, foundations, and other supporters the confidence that their contributions are being used to foster increased well-being and support for those living with or caring for someone with YOPD.

    Potential donors can learn more about YOPN through the organization’s Candid profile.

    About Young Onset Parkinson’s Network (YOPN)

    Young Onset Parkinson’s Network 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.

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  • 08/15/2022 10:08 AM | Anonymous

    Vienna, Va., August 5, 2022 – Young Onset Parkinson’s Network (YOPN) announced today a new sponsorship agreement with Supernus Pharmaceuticals. This sponsorship will provide financial support for key programming and resource opportunities for the young onset Parkinson’s population. YOPN is the only member-based organization exclusively focused on supporting the needs of the Young Onset Parkinson’s Disease (YOPD) community.

    YOPN relies on the generosity of donors and sponsors to maintain a no-cost membership for our members. With the support of Supernus, we will be able to continue to add new programs and resources that help our members live well and thrive.

    Supernus Pharmaceuticals is a biopharmaceutical company focused on developing and commercializing products for the treatment of central nervous system (CNS) diseases, including treatments for dyskinesia in Parkinson’s patients receiving levodopa-based therapy.

    This initial sponsorship will help support YOPN’s speaker series, including an upcoming educational event on “Managing OFF Episodes in Parkinson’s Disease (PD)” with Dr. Mindy Bixby, Movement Disorder Specialist at Hoag Hospital in Laguna Beach, California. The sponsorship also will provide funding for the YOPN bi-monthly Podcast Series:  Living Well Starts HereSM  as well as upcoming membership discussions around the specific challenges facing those with YOPD.

    About Supernus Pharmaceuticals, Inc.

    Supernus Pharmaceuticals is a biopharmaceutical company focused on developing and commercializing products for the treatment of central nervous system (CNS) diseases.  Our diverse neuroscience portfolio includes approved treatments for epilepsy, migraine, ADHD, hypomobility in PD, cervical dystonia, chronic sialorrhea, dyskinesia in PD patients receiving levodopa-based therapy, and drug-induced extrapyramidal reactions in adult patients. We are developing a broad range of novel CNS product candidates including new potential treatments for hypomobility in PD, epilepsy, depression, and other CNS disorders. For more information, please visit www.supernus.com.

    About Young Onset Parkinson’s Network (YOPN)

    Young Onset Parkinson’s Network 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.

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  • 07/27/2022 8:53 AM | Anonymous

    PRESS RELEASE - Young Onset Parkinson’s Network Awarded Community Grant from the  Parkinson’s Foundation for the Third Consecutive Year

    Vienna, Va., July 27, 2022 – Young Onset Parkinson’s Network (YOPN), the only member-based organization exclusively focused on supporting the needs of the Young Onset Parkinson’s Disease (YOPD) community, announced today that it has been awarded a Community Grant from the Parkinson’s Foundation for the third consecutive year.

     YOPN received $16,000 for new programming that aligns with the Foundation’s 2022 grant cycle focus: exercise/movement classes (specifically designed for the young onset PD population), programs/resources to support the newly diagnosed, as well as creating awareness and providing support for the intersection of mental health and YOPD.

     YOPN is honored to once again receive support from the Parkinson’s Foundation. YOPN has grown exponentially since our inception in 2020. This grant will allow us to expand our programming for members, addressing the unique challenges faced by those who receive this early diagnosis and are living with YOPD.

     YOPN’s 2022 Community Grant will be used to develop new programming designed to educate and assist members who have been newly diagnosed with YOPD. Programming includes educational videos, a peer mentoring program, and access to a tele-care coordinator to help those struggling with their diagnosis navigate available resources.

    About Young Onset Parkinson’s Network (YOPN)

    Young Onset Parkinson’s Network 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.

     ###

  • 06/24/2022 11:39 AM | Anonymous

    Cardinal Hill Swim Team Swim Cap Fundraiser to Benefit YOPN

    YOPN is honored to be selected as the recipient of a special service and fundraising project led by Courtney Watts, swimmer and assistant coach of the Cardinal Hill Swim Team in Fairfax, Virginia.  Sparked by the tenacity and strength she saw in her swim coach’s wife, Watts initiated a special swim cap fundraiser to benefit YOPN. In addition to hosting YOPN Founder Anna Grill to talk about the disease and what it’s like living with YOPD, Watts designed a swim cap to represent both Cardinal Hill and YOPN – a silicone navy blue cap adorned with YOPN’s gold logo, with a touch of cardinal flair. Throughout the season at different events the team will be accepting donations (minimum of $15) for the Young Onset Parkinson’s Network. Those who donate will receive a cap they can wear with pride!  A special thanks to Courtney Watts for leading this amazing effort. We hope it will spark others to help raise awareness for YOPD and the Young Onset Parkinson’s Network.

  • 03/28/2022 12:00 PM | Anonymous
    IN ACTION - YOPN to participate in the 2022 First Coast Parkinson's Run on April 30, 2022 in Jacksonville, Florida

    YOPN is excited to be part of the upcoming 2022 First Coast Parkinson's Run on Saturday, April 30,2022 at Riverside Park, Jacksonville, Florida. The run was established to raise funds in support of providing resources to patients, care partners, and support groups to ensure a better quality of life for those diagnosed with Parkinson’s. YOPN will be on site to raise awareness for YOPD, sharing information about what resources are available for this segment of the population. For information and to join the run visit www.firstcoastparkinsonsrun.com.

    YOPN Board Chair, Jennifer Otero will be onsite and YOPN will have a table at the run. If you’re interested in YOPN or are a member in the area, please consider joining us. It’s a great opportunity to meet and connect with fellow YOPN members and to raise awareness for the unique challenges associated with YOPD.

  • 03/01/2022 9:00 AM | Anonymous

    YOPN Launches New Website and Membership Portal on March 1, 2022

    The Young Onset Parkinson’s Network (YOPN) announced to today the launch of its new website  (www.yopnetwork.org) and membership portal. The new website focuses on increasing awareness for YOPN offers those diagnosed with Young Onset Parkinson’s Disease (YOPD) and their loved ones an all-inclusive network for education, programming and resources dedicated specifically to the challenges associated with YOPD. The new website focuses on increasing awareness of YOPD and providing access and connections for this historically underserved population. Through membership individuals have the opportunity to be part of a safe, supportive, and vibrant community where they can acknowledge the implications of their diagnosis, share and learn from other members, and explore their path forward for a fulfilling life beyond the disease.

    Young Onset Parkinson’s Network is a nonprofit, 501(c)(3) educational and charitable organization. The cost of membership is free, offset by the generosity of the organization’s sponsors, including a grant from the Parkinson’s Foundation. Through YOPN, members have the holistic support needed not only to manage, but to thrive and live well beyond this unexpected, early diagnosis.

     

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