Advocacy Day
Find the NephCure Advocacy Day 2011 Application here!
What is NephCure Advocacy Day?
NephCure Advocacy Day is a unique opportunity to speak out on behalf of vital research funding for improving treatment and finding a cure for FSGS, Minimal Change Disease, and Nephrotic Syndrome.
When is Advocacy Day?
NephCure Advocacy Day will take place on Wednesday, October 5 from 8:30 am to 4:30 pm.
Why is Advocacy Day important?
NephCure Advocacy Day is a powerful way to have your voice heard by those who are in the position to implement policy changes. Advocacy Day provides you with the opportunity to tell congressional representatives and senators firsthand the importance of funding research for these debilitating kidney diseases. It is an empowering experience that can lead to tangible results.
Do I need advocacy experience to participate in NephCure Advocacy Day?
No experience is necessary to participate in NephCure Advocacy Day. We will provide all the training and materials that you will need. You are already an expert in the most important thing of all- what it means to be affected by NS and FSGS. Advocacy Day is an opportunity to share your unique knowledge with policy makers of our country.
What is the schedule for Advocacy Day?
8:30 am – Breakfast and legislative advocacy training session at
2103 Rayburn House Office Building
9:00 am – Presentation by Dr. Star from NIDDK
10:00 am to 12:00 pm – Senate Congressional visits (in teams)
12:00 pm – Lunch (on your own in the Capitol Hill cafeteria)
1:30 pm to 4:00 pm – House Congressional visits (in teams)
4:00 pm to 4:30 pm - Debriefing
How will I get to NephCure Advocacy Day in Washington, D.C.? How will I travel once I'm there?
There is a choice of airports around Washington, D.C. including Ronald Reagan Washington National Airport, Washington Dulles International Airport, and Baltimore/Washington International. The Ronald Reagan National Airport is connected directly to the blue line on the Metro rail which also stops near both Capitol Hill and the hotel where the morning training and presentation will be held.
Where will I stay during Advocacy Day?
The NephCure Foundation has reserved a block of guest rooms at a hotel near to Capitol Hill. You are also welcome to make your own arrangements if you should find that preferable.
Is financial assistance available?
If you believe you will be in need of financial assistance, please make sure to check on the box on the Advocacy Day Application. The NephCure Foundation will only be able to provide financial assistance for those patients whose representative or senator is part of the Labor, Health and Human Services, and Education appropriations subcommittee (LHHS) which recommends funding for the National Institutes of Health (NIH). The NIH conducts and supports research grants in health and illnesses, including FSGS and NS.
With whom will I be meeting in each congressional office?
Most likely you will be meeting with congressional staffers. These staffers are important because the actions that they recommend are usually adopted by the members of Congress for whom they work. It is also possible they you may meet directly with your congressional representative.
How should I dress for Advocacy Day?
It is possible that there will be a good amount of walking so please wear comfortable shoes. Business casual attire is appropriate for meeting with members of Congress and their staff. For men, there is no need to wear a suit and tie unless that is preferred; slacks and a blazer/jacket are perfectly acceptable. For women, a pantsuit, skirt and jacket/sweater, or anything along those lines is appropriate.
What do we hope to accomplish during Advocacy Day?
Congress is currently working on the federal government's budget for fiscal year 2011 and 2012, which will impact funding of the National Institute of Health (NIH). NIH supports research on health and illness, including FSGS and NS. Our goal this Advocacy Day is to demonstrate to Congress the importance of this funding to constituents so that the NIH will be able to continue to fund NS and FSGS research.
What happens after Advocacy Day?
It is important to stay in contact with your congressional representatives throughout the year. Much of the success of Advocacy rests with the follow-up that volunteer advocates like you are able to do. Visiting your congressional representatives at home after seeing them in Washington, D.C. will also reinforce your message. Pay a visit to your congressional representative’s local offices after Advocacy Day to let them know what you discussed, and with whom, when you were in Washington. Work within your community to gain support for the cause. Click here to learn more.
Questions?
For further inquiries, please contact Nadia Stadnycki by email at nstadnycki@nephcure.org or by phone at 610.540.0186, extension 26.