Dystonia Advocacy Day
May 8-9, 2012 -Washington, D.C.
Sponsored by the Dystonia Advocacy Network (DAN)
ABOUT THE DAN
The mission of the Dystonia Advocacy Network (DAN)is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families. The DAN is comprised of the following Dystonia advocacy groups: Benign Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc., Dystonia Medical Research Foundation (DMRF), National Spasmodic Dysphonia Association (NSDA), and National Spasmodic Torticollis Association (NSTA).
EVENT INFORMATION
Tuesday, May 8thwill feature an afternoon of Advocacy Training and Legislative Review followed by dinner at the Four Point by Sheraton Washington D.C. Downtown. On Wednesday, May 9th all advocates will spend the day on Capitol Hill.We will conclude on Wednesday by 5:00 pm.In addition to sharing your personal story, you will urge Members of Congress to take action on important initiatives, like funding federal dystonia research activities. The DAN Position Paper, Talking Points and Backgrounder will be sent to you in advance of your trip.
REGISTRATION
There is no fee for this event, but all advocates need to cover their transportation and lodging expenses.Dinner on Tuesday night and Breakfast on Wednesday morning will be provided.As the deadline for reserving hotel rooms is April 11thwe ask that you register with DMRF no later than Friday, April16th.
HOTEL INFORMATION
Four Points by Sheraton Washington D.C. Downtown
1209 K Street NW
Washington, DC20005
(202) 289-7600
Four Points by Sheraton Washington D.C. Downtown is conveniently located on the K Street business corridor and within walking distance of the revitalized Penn Quarter arts and entertainment district with its many galleries, museums and the VerizonCenter.
Additional information about the hotel can be found at
The special room rate for advocates is $270 (plus tax) for a single or double.This rate is guaranteed untilApril 16, 2012. Please note all room reservations are being made by DMRF – there is no need for you to contact the hotel.Confirmation numbers will be provided for you prior to the event.Please let us know if you need a specially equipped or positioned hotel room and also if you have any dietary restrictions.We also need to know if you require accessible transportation from the hotel to Capitol Hill on Wednesday morning.
TRANSPORTATION
The Four Points by Sheraton Washington D.C. Downtown is accessible from Reagan National Airport (DCA), Washington Dulles International Airport (IAD), and Union Station (if you arrive via train). The hotel does not offer shuttle service, but does offer valet and overnight parking for a fee of $38 (plus tax).From DCA cabs are recommended and a one-way ride is about $20. From Dulles cabs are available for approximately $60 (sharing encouraged).The closest Metro Station is the McPherson Square Station (0.2 miles from the hotel).Transportation from the hotel to Capitol Hill will be provided for all advocates on Wednesday morning.
DRESS
Business casual attire is appropriate for the two days.For Advocacy Day on Wednesday comfortable walking shoes are highly recommended.
TENTATIVE AGENDA
DAY 1: Tuesday, May 8th
1:00 PM to 3:30 PM – New Advocate Training
First time being an Advocate? Not to worry.Our Washington, D.C. Liaison, Dale Dirks and his team from the Health and Medicine Counsel of Washington will lead us in training.Veteran advocates are more than welcome to attend this training session, too, as a refresher
4:00 PM to 5:00 PM – Legislative Priorities Review
Meet your fellow team members and review the DAN priorities that we will present on Advocacy Day
6:00 PM to 8:00 PM – Dinner at the Four Points by Sheraton Washington D.C. Downtown
Featuring special guest speakers
DAY 2:Wednesday, May 9th
7:00 AM – Breakfast at the Four Points by Sheraton Washington D.C. Downtown
Review our legislative agenda and get energized for your day on the Hill
8:30 AM to 5:00 PM - Capitol Hill Visits
Dystonia Advocacy Day 2012
May 8-9, 2012 ║ Washington, DC
REGISTRATION FORM
Please return this form no later than by Friday, April 16th, 2012 to:
Standard Mail:Dystonia Advocacy Network
c/o DMRF
One East Wacker Drive, Suite 2810
Chicago, Illinois60601-1905
Fax:(312) 803-0138
E-mail:
(Please scan this form and attach it, or include the information requested by this form in the body of an e-mail.)
Online:Complete this form digitally at
______
Name Title (if applicable)
______
Address
______
CityStateZip
______
E-mailDaytimeTelephoneFax
Organization Affiliation: (please circle all that apply)
BEBRFDySTonia, Inc.DMRFNSDANSTA
Special Needs (dietary, accessible room, transportation): ______
______
__ I would not like my information shared in a participant directory
Sessions (please check off all you will attend)
___New Advocate Training (Tuesday - 1:15 pm to 3:30 pm)
___Legislative Priorities Review (Tuesday - 4:00 pm to 5:30 pm)
___Advocate Dinner (Tuesday – 6:30 pm to 8:00 pm)
___Advocate Breakfast (Wednesday - 7:30 am)
___Legislative Visits (Wednesday - 8:30 am to 5:00 pm)