Thank You for Attending!
A copy of the agenda can be found here.
We also have:
Slides from Hill
Slides from Dr,
Beth-Anne Sieber's presentation
Udall Centers mentioned
in Dr. Sieber’s presentation
Educational Materials and Webinars
If you were unable to attend the live webinar, a
recording is available at the links below.
First Participant Webinar covering policy priorities and
educational materials (Tuesday, July 23)
Second Participant Webinar covering social media and
local press. (Tuesday, August 20)
Also, we will host a
Post-Forum webinar on Tuesday, September 17 at noon eastern. You can register
for the webinar here. This webinar will include resources to help you
continue your advocacy throughout the year, as well as tips on how to follow-up
after your meetings.
We will be
focusing on three priority issues during the Policy Forum: the economic burden
of Parkinson's disease, an out-of-pocket spending cap for Medicare Part D, and
increased access to mental health care. At the Forum, you will be provided
talking points to help shape your message, as well as documents to leave on
Capitol Hill. You can preview some of the materials here:
The Economic Burden of Parkinson's
Support Increased Access to Mental
Health Care for People with Parkinson's
Support a Prescription Drug Cap in
Medicare Part D
recent webinar, we provided several links to social media resources. Those
links are posted below for easy access. During the Forum, we encourage you to
use #Parkinsons and #Act4PD on all of your social media
posts leading up to, during and after the Forum. And don't forget to tag The
Michael J. Fox Foundation and Parkinson's Foundation.
Download Twitter here.
MJFF Social Media: Facebook, Instagram, Twitter and LinkedIn
PF Social Media: Facebook, Instagram, Twitter and LinkedIn
During the Forum, if you have
pictures that you would like to have posted to the official social media feeds
please email Kimberley Marumahoko or Melanie
FAQ (Updated 8/27/2019)
Capitol Hill Information:
Q: How do I schedule meetings
with my representative and senators?
A: The organizers for the Policy Forum have contracted
with a company that will schedule Capitol Hill meetings for attendees. You will
receive more information about your schedule and how to prepare as we get
closer to the Forum.
A: Soapbox, the company that Forum organizers are working
with to schedule Capitol Hill meetings will send you an email on Friday,
September 6 with your schedule. Please keep in mind that schedules can change
at any time – including up to Tuesday morning. The email will also include
information on how you can get updates to your schedule.
A: Your group will arrive at the member’s office a few
minutes before your appointment time and your group leader will check in. You
then will meet with your senator, representative or one of their staff members.
Attendees will introduce themselves and the group will discuss several issues
that matter to people with Parkinson’s. As space can be limited in some
offices, these meetings may take place in a hallway or a small meeting room. At
the Forum training sessions, we will discuss the messages to be conveyed at the
meeting as well as other points of conversation.
A: You will receive written materials prior to the Forum,
as well as trainings on Monday, September 9 at the Forum. Additionally, prior
to the Forum, there will be two webinars to help attendees prepare for the trip
The two webinars will cover logistical information, as
well as provide training on advocacy and the issues that we will be discussing.
Participation in the webinars is required and recordings of the presentations
will be made available on this website. The webinars are currently being
scheduled and the dates and topics will be posted here as soon as they are
Q: How will I get to Capitol Hill for my meetings?
A: Shuttle buses will transport all advocates to and from
the J.W. Marriott and Capitol Hill on Tuesday, September 10. More specific
information will be available at the Forum.
A: You will be with a group of several other Forum
attendees. We will designate a group leader and provide them with training
before the event. You will be given a map of Capitol Hill, and security
officers in the House and Senate are always available to assist you.
Q: Where can I get lunch on Capitol Hill?
A: The Capitol Visitors Center has the largest cafeteria
with many options and lots of seating. The cafeteria is open from 11:00 am –
4:00 pm for lunch. Please note that you will have to go through security and
all outside food and drink is prohibited in the Capitol. On the House side, the
Longworth House Office Building houses a large cafeteria in the basement of the
building. Smaller facilities are located in the basement of Cannon House Office
Building and Rayburn Office Building. On the Senate side, the largest eatery is
the Dirksen Senate Office Building cafeteria in the basement of the building.
Just as on the House side, the other Senate office buildings have smaller
options available. If you want to leave the Capitol complex, the Library of
Congress Madison Building and the Supreme Court have cafeterias, although the
Supreme Court cafeteria can be closed between noon and 1:00 pm for court staff.
Q: What do I do after my meetings?
A: The in-person meeting is just the beginning! Within a
few days of your visit, make sure to send a thank you email (ask for the
business card of the person you met with in order to do so). We will provide
you with draft email text that will remind lawmakers and staffers about the
issues you discussed. Keep in touch! Feel free to send the staff member items
relevant to you and the broader Parkinson's community.
General Forum Questions:
Q: What is the attire for the Forum?
A: While there is no formal dress code for the
Forum, we do encourage business casual and suggest layers. Hotel room
temperatures can fluctuate, especially with a lot of people in the
room. For Tuesday on Capitol Hill, we encourage business attire, though
business casual is acceptable. Please remember early September in Washington
can still be very warm and you will be going in and out of buildings. We also
encourage comfortable shoes as there is a lot of walking around Capitol
Q: What meals will I be responsible for?
A: The following meals will be provided to all Forum
~ Breakfast, lunch and dinner will be available on
Monday, September 9
~ Breakfast on Tuesday, September 10
Attendees are responsible for all other food or beverage
costs, including lunch on Hill Day. There are several cafeterias on Capitol
Hill where you can purchase food.
Q: Will I need a credit card for the hotel if I received
A: Yes, you will be asked to provide a credit card at
check-in for any incidentals that you may incur during the trip.
Q: I need to go to the airport straight from Hill Day.
What should I do with my bags?
A: Large bags are not permitted in Capitol Hill offices.
Please allow time to return to the hotel to collect your bags before heading to
If you have any questions or
concerns please email email@example.com.
Thank you to our
2019 Parkinson's Policy Forum Supporters
American Parkinson Disease Association
Parkinson’s Unity Walk
Friends of Parkinson’s
Wilkins Parkinson’s Foundation
Davis Phinney Foundation for Parkinson’s
Houston Area Parkinson Society
Northwest Parkinson's Foundation