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Thank You for Attending!

 

Thank you for traveling to Washington, D.C. and participating in the 2019 Parkinson's Policy Forum. Working with fellow advocates, you met with 196 Congressional offices representing 38 states. You held meetings with 65 members of Congress - this is an incredible showing for a uniquely busy day on Capitol Hill. 

Your voices on Capitol Hill were echoed across the country. While you were meeting your elected officials, thousands of advocates from across the country were emailing, calling and tweeting to reinforce the message you were delivering in person.

 

Don’t forget to send a thank you follow-up email to the staff members with whom you met. You can find a sample email here. Over the coming weeks and months, we encourage you to reach out to your lawmakers and keep the lines of communication open. Legislators will be in their home states the first two weeks of October. This is a great time to schedule an in-district meeting! 


Agenda

 

A copy of the agenda can be found here. 

 

We also have:

Slides from Hill Day

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. 

 

Policy Forum Issues

 

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 Disease Study

Support Increased Access to Mental Health Care for People with Parkinson's

Support a Prescription Drug Cap in Medicare Part D


Social Media

 

During the 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 Schaffel 


You can also email Carol Blymire, Kimberley Marumahoko or Cathy Whitlock with any social media questions.


Local Press

It’s also a great time to get some hometown press coverage about your meetings on Capitol Hill. Coverage in your local community can help spread the word about the urgent need for support from policymakers on issues that impact the Parkinson’s community. A letter to the editor for you to customize and submit to your local newspaper is available here. 

The customizable areas are in [[brackets]]]. You can delete the brackets once you’ve personalized your letter. Please keep the letter short (no more than 250 words) and please keep it respectful. You will see in the template letter that you’ll need to include your contact details. Please note: they will not print your email address and phone number; they need it to contact you to verify that you wrote the letter. 
 
To find out how to submit it, please call your local newspaper and ask them for the email address to submit a letter to the editor. Or, go your newspaper’s website and click on the “Opinion” section to find a submission form or email address. If you need our assistance, please reach out to Kristina Magana (kmagana@michaeljfox.org). 

Good luck! Let us know if your letter runs in the paper – we'd love to see it and potentially feature it on our social media channels!


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. 


Q. When will I receive my schedule for my Capitol Hill meetings?

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.


Q: What is a meeting like? What will I discuss with my representative or senator?

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.


Q: How will I know what to say in my meeting?

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 to Washington. 

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 scheduled. 



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. 


Q: How will I know where to go for my meetings?

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 Hill. 



Q: What meals will I be responsible for?

A: The following meals will be provided to all Forum attendees:

~ 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 scholarship?

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 the airport. 


Questions?

If you have any questions or concerns please email info@parkinsonsforum.org.  

Thank you to our 
2019 Parkinson's Policy Forum Supporters

American Parkinson Disease Association

Parkinson’s Unity Walk

Friends of Parkinson’s

Parkinson Alliance

Wilkins Parkinson’s Foundation

Davis Phinney Foundation for Parkinson’s

Houston Area Parkinson Society

Parkinson Voice Project

Northwest Parkinson's Foundation