Raise Awareness

From Washington, D.C. to Tennessee, Advocates Speak Up for the PD Community

Signing documents

Judy and Phil Bellenfant were energized to be in Washington, D.C. in March for the 2018 Parkinson’s Policy Forum and to meet with Representative Chuck Fleischmann (R-TN) in his Capitol Hill office. 

And then, it snowed. It snowed so much that the federal government closed for the day and Judy and Phil couldn’t make it to the Hill. But there was no stopping the Bellenfants from making their voices heard.

Judy and Phil Bellenfant

“We were disappointed we couldn’t go to Capitol Hill, but we quickly got over it and got on the phone and on social media to tell our friends to call Congress and ask for Parkinson’s research funding,” said Judy, whose husband, Phil, lives with Parkinson’s disease. “We spent the day making sure congressional telephones were ringing off the hook!”

The Bellenfants knew they could do even more once they got back to Chattanooga, Tennessee.

“As soon as we got home, we reached out to Congressman Fleischmann’s office to set up a meeting when he was here in town,” said Judy.

Visiting with your members of Congress when they’re back home (an in-district meeting) is a great way to educate them about the needs of the Parkinson’s disease community. Often, Washington, D.C. offices are hectic and fast-paced, so lawmakers don’t have much time to sit with constituents. Meetings conducted in the districts frequently last longer, leaving more time for advocates to share their stories and educate legislators on life with Parkinson’s. 

Phil joked about his meeting strategy, “The day of our visit, we picked up a few fresh doughnuts on the way to our representative’s office so we could be sure his staff was well taken care of and might be more willing to listen to what we had to say.”

Whether it was the delicious doughnuts or their engaging storytelling, the Bellenfants had a wonderful, productive meeting with Fleischmann. The congressman was impressed not just with the personal story they told about what it’s like living with Parkinson’s, but also the overwhelming support from the Bellenfants’ loved ones.

“So many of our friends and family called Chuck’s office while we were at the Forum to ask for federal funding for research. And they said they were calling on our behalf, so his staff certainly knew who we were by the time we met with them,” said Judy. “We also took a book of more than 100 letters of support for Parkinson’s research funding — letters we’d pulled together in honor of Phil’s birthday. It helped put a face on the disease, and gave Chuck a reminder of why his votes matter to the folks back home.”

The Bellenfants are big believers in advocacy, whether it’s in Washington, D.C. or in their home state. Throughout the year, they’ll keep in touch with Representative Fleischmann and will continue to speak up for the Parkinson’s community.

“Phil and I encourage anyone who wants to have a voice and feel like they have some kind of control over this disease to become an advocate,” Judy said. “Don’t ever be afraid to tell your story, because the more people calling and emailing their members of Congress, the better. Our voices matter, and we hope others will join us in being advocates on these important issues,” she added.

If you’d like to get involved, visit our advocacy page for resources and information.

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