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Creating a Community for YOPD Patients

Creating a Community for YOPD Patients

As a member of the Advancement team at The Michael J. Fox Foundation, the best part of my job is meeting with supporters of the Foundation. I’m continually inspired by their determination and optimism, as well as their efforts to make a difference. Simply put, their creativity knows no limits when it comes to helping speed a cure.

When I talk with those who have young-onset Parkinson’s, I frequently hear how isolating this experience can be, and how challenging it is to find others who are affected nearby. To help solve this, Team Fox member Bret Parker started a private Facebook group to connect the YOPD community and create an online forum. The group delves into issues of particular interest to YOPD patients, such as disclosure, dealing with the workplace, clinical trials and treatment options. It’s also providing a space for members to post information about PD-related events and fundraising opportunities.

“Having met so many exceptional YOPD patients who grapple with the same things, I wanted to leverage technology to bring us all closer together — so we could compare notes and support each other,” says Bret.

In just over two months, the group has more than 90 members and the dialogue is going strong. As a private group, it offers a safe and relatively confidential environment, and is not visible to non-members on Facebook. If you have YOPD, or know someone who does, learn more by connecting with Bret Parker at http://www.facebook.com/bretparker.

 

 

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