Kerry Howard is on a mission to Washington.
The 64-year-old Juneau resident will be in the nation’s capital Sept. 9-10 to attend the Parkinson’s Policy Forum. She’ll be meeting with activists from across the nation to discuss patient issues and needs.
“The chance to join advocates like myself to share our Parkinson’s journey and show our nation’s leaders how they can use their votes to support Parkinson’s research and care is impactful,” Howard said.
Howard was diagnosed with Parkinson’s disease in 2016 but hasn’t let that slow her down. She regularly participates in programs at Pavitt Health & Fitness and is an avid photographer.
“Although day-to-day activities can be more challenging with this disease, I believe in volunteering my time, energy, and effort to try to make a difference,” she said.
On Sept. 10, Howard will meet with Alaska’s congressional delegation to talk about policy opportunities that can help Parkinson’s patients.
The forum will feature advocacy training sessions as well as presentations on Parkinson’s research.
According to a press release from the Forum’s website, there will be three areas of focus this year: the economic burden of Parkinson’s disease, an out-of-pocket spending cap for Medicare, and increased access to mental health care.
Howard attended the forum in 2018 with a group of advocates from Anchorage, and the group met with all three of Alaska’s members of Congress.
“Last year’s forum focused on funding for a National Neurological Conditions Surveillance System, which will create a database of value to researchers,” Howard told the Empire in an email. “It is my understanding that Alaska’s delegation supported this funding, which is something anyone who has a neurological disease can be happy about,” she said.
Howard added that there was a bipartisan Congressional Caucus on Parkinson’s disease which none of Alaska’s delegation have signed onto and that she would like to see them do so.
Because most advocacy goes through the federal level, Howard said there weren’t any statewide efforts in Alaska she was aware of.
“One of the best resources we have in Juneau is other Parkinson’s patients,” she said. “We are a small but supportive group of people who help each other live quality lives by exercising, socializing and sharing information.”
The forum is co-hosted by the Parkinson’s Foundation and the Michael J. Fox Foundation, both of which advocate for Parkinson’s awareness and research.
One of the key goals of the forum is to illustrate the importance of federally-funded research towards a cure to elected officials.
Over a million Americans are affected by Parkinson’s disease, which is the second most common neurodegenerative disease after Alzheimer’s disease. Parkinson’s disease is characterized by a usually progressive loss of motor control as well as mental and behavioral changes.
Most people develop Parkinson’s after the age of 50, according to NIH, and the disease affects 50 percent more men than women. Alaska had 7.6 deaths from Parkinson’s per 100,000 people, according to the most recent data in 2017 from The Centers for Disease Control and Prevention.
• Contact reporter Peter Segall at 523-2228 or psegall@juneauempire.com.
