Advocacy in Georgia

Dear Lupus Activist,

You hold the power to make the difference for lupus. Members of Congress are returning to their states for the August district work period (August 5 - September 9), and often times meeting with them in the state is the best way to get their full attention on your issue.

Let’s continue the momentum generated our year round advocacy efforts and urge members of Congress to support lupus research and access to treatments.

The Georgia Chapter Advocacy Team is contacting Representatives and Senators to schedule an in-district meeting and take this opportunity to connect on issues important to people with lupus - ask them to support lupus research, access to treatments, and to join the Congressional Lupus Caucus.  We invite you to attend the meeting and share your story.  To find district office information, visit www.capwiz.com/lfa.

Meeting with your members of Congress in-person and in the district is a great way to remind them how important it is to solve the cruel mystery of lupus. The Foundation would like to hear about your August recess plans; please email us at kimschofield@bellsouth.net and let me know if you will attend a meeting or attend a Town Hall.

Thank you for all that you do to raise awareness of lupus and support efforts to better understand this mysterious and cruel disease. 

Kim Schofield
Advocacy Chair

HOW TO MAKE A DISTRICT MEETING REQUEST

Before Calling to Schedule a Meeting

Before making your initial phone call to request a meeting, make sure you have all the necessary information gathered. Information should include:

  • at least two dates and times for a meeting;
  • who will be attending the meeting, and where they live; and,
  • what you want to discuss

Scheduling the Meeting Request

Each office has a different system for scheduling meetings. Some members require meeting requests to be in writing and submitted via fax or e-mail. Others require a web form be filled out, while some take phone requests.

  • Start with a call:
  • You can find the contact information for their district offices here: http://www.capwiz.com/lfa/dbq/officials/
  • Tell the receptionist that you are a constituent, you live in [city, state], and you would like to meet with Representative X or Senator Y to discuss issues related to lupus.
  • The receptionist will give you instructions on how to submit your formal meeting request (please see attached sample meeting request letter) or will put you in touch with the member’s scheduler.

The Key is Follow-Up

After submitting your formal meeting request, the key to successfully scheduling a meeting is follow-up. Ask the scheduler or staffer when you can follow-up. Most schedules are made approximately one week in advance, so it is important for you to remain flexible. You will be successful if you are professional and friendly.

Next Steps

Congratulations! You have successfully scheduled a meeting with your Representative or Senator. Use this opportunity to begin building a relationship with your member of Congress and his or her staff. This is your chance to raise awareness about lupus.

Documents to Print and Bring to Your Meeting

Talking Points

Join the Congressional Lupus Caucus

Request for Support - NIH Funding

Request for Support - PATA 

 


Become a Lupus Activist

What does a Lupus Activist do?
A lupus activist engages in educating their federal, state, and locally elected officials about the cruel mystery of lupus.  Whether through a letter, email, phone call, or face-to-face meetings with elected officials, lupus activists are the vital voice on legislation and policies issues impacting people with lupus and their families.  An activist’s voice makes a difference.

Who can be a Lupus Activist?
Anyone who cares about lupus!  You don't have to be an expert in government affairs to share your knowledge and story about lupus.

SIGN UP NOW TO BE A LUPUS ACTIVIST

 


Senate Passes Bill 352 Establishing the Georgia Council on Lupus Education and Awareness

On Wednesday, February 19th, the Senate voted and passed SB 352 creating the first Georgia Council on Lupus Education and Awareness within the Department of Community Health. The Council will consist of six members appointed by the Governor, the Health Commissioner, Speaker of the House and the Lieutenant Governor. These members must include a physician who treats lupus and a patient.

Two of the initial members appointed by the Governor will serve for one year, all other appointments will be for two years. The council will select a chairperson from among its members.

The duties of the Council will include:

  • Initially investigating the level of education concerning lupus in Georgia, to be posted on its website
  • Developing information on lupus endorsed by government agencies, to be posted on its website
  • Developing a directory of lupus related health care services, to be posted on the Department’s website

The Department may distribute such information, subject to appropriations or access to other public or private funds. The Council is required to prepare an annual report on its activities and, as it deems appropriate, recommendations for legislative action. The Council may solicit and accept donations, gifts, grants, property, or matching funds from any public or private source for the use of the Council in performing its functions.

We are so grateful for the wonderful leadership of Senator Renee Unterman and our passionate advocacy chair, Kim Schofield and the patients and families who joined us at our Lupus Awareness Day. Many met their legislators and heard our resolution in the Senate. With every step in our advocacy journey, we have seen small victories and we are moving the needle of lupus awareness within the Georgia State legislature toward future appropriations for research and lupus education.

Lupus is enormously prevalent in our state, as confirmed in the recent report from Dr. Sam Lim and Emory University which is positioned to become the lupus research capitol in the nation and beyond. Read More about the Georgia Lupus Registry, Georgians Organized Against Lupus (GOAL), and the Lowance Center for Human Immunology at Emory University.