Mar. 01, 2018 8:30 am | Atlanta,GA

2018 Lupus Advovacy Day

The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases. Lupus strikes without warning and can have effects that last a lifetime. There is no known cause or cure of lupus, but there is hope.


2018 Lupus Advocacy Day  - Thursday, March 1st

Join us for our 11th Annual Lupus Advocacy Day at the Georgia State Capitol. Come and learn about advocacy as you share your lupus experience and personal story with your elected officials. This empowering day includes guest speakers, House and Senate Resolutions, Governors Proclamation and a photo opportunity with Governor Deal and many of your Representatives and Senators.

Schedule of Events

9:00 - 9:40 a.m. Room 403 Chapter Welcome and Lupus Presentation
    Representative Kim Schofield
Chapter Staff and leadership
Aleta McLean, Ambassador Lead
Chris Reed, Advocacy Co-Chair
     
10:00 a.m. North Wing Rotunda Photo with Governor Nathan Deal
     
10:30 a.m. – 11:30 a.m 4th Floor Gallery Lupus Resolutions in the House and Senate
    House Resolution with Rep. Kim Schofield
Senate Resolution with Sen. Donzella James
     
10:30 a.m. – 11:30 a.m 3rd Floor House and Senate Lupus Activists Meet Their Representatives
    Page Desks Chapter volunteers, lupus activists and families will call on state representatives, including calling representatives from the house and senate floor.
     
11:30 a.m. – 12:30 p.m.   Visit with Representatives and Aides
     
12:30 p.m. – 2:00 p.m. Room 216 Lunch and Debrief


Advocacy Day Details


Advocacy: You have a Powerful Story to Tell

Listen to our Story Writing Webinar  You have a powerful story to tell and it needs to be heard! Why you need to tell YOUR story:

  • You can affect change - Your elected officials want to help! They need to hear from you about your life with lupus to make a difference.
  • You can see things in perspective - Sometimes simply writing out your experiences helps you make sense of what is going on with your body and your life.
  • There is a healing power in telling your story - You allow the listener to understand your circumstances and your reality, giving them the opportunity to support you in a way that truly meets your needs!

Advocacy Ambassadors Geri Hilegass and Tamie Miller will guide you through a simple process for sharing your story with your legislators. 

Listen to the webinar and download the PDF


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


Advocacy Chair Kim Schofield is Elected to Represent District 60 in Georgia

Congratulations to our Advocacy Chair Kim Schofield. As the newly elected State Representative for Georgia District 60, Representative Schofield will continue to fight tirelessly for the interests of Georgians including expanding medicaid and affordable healthcare for all. 

Georgia Council on Lupus Education and Awareness (GCLEA)

The Georgia Council on Lupus Education and Awareness (GCLEA) was established by the Georgia General Assembly and Governor Nathan Deal in 2014 to improve the lives of Georgia residents who live with lupus by improving public education and awareness, improving access to resources for patients and family members, obtaining information that will inform current and future public health efforts, and increasing appropriate diagnosis of lupus by non-rheumatologists.

The GCLEA aspires to

  • Develop resources and programs that will improve the level of education and awareness concerning lupus for health care providers and the general public,
  • Develop resources and programs for communities that lack access to specialized lupus health care providers, based upon the incidence and prevalence of lupus in the State of Georgia and
  • Develop programs that encourage professional development and specialization in the diagnosis of lupus and the care, management and treatment of people with lupus

The GCLEA was established by Senate Bill 352 in 2014, as a result of seven years of the Georgia Chapter’s advocacy efforts. Click here to visit their website.

Lupus Community, including Advocacy Co-Chair Chris Reed, Shares Views with FDA at Historic Patient-Focused Drug Development Meeting

Septmember 29, 2017 - Top decision makers at the U.S. Food and Drug Administration (FDA) heard from over 550 people impacted by lupus this week at an unprecedented in-person meeting and live webcast about what it’s really like to live with the disease and what they need most from new treatments.

Three organizations – the Lupus and Allied Diseases Association, , the Lupus Foundation of America, and the Lupus Research Alliance – organized the meeting as part of the FDA’s externally-led Patient-Focused Drug Development (PFDD) Initiative. The PFDD was created by the FDA to allow regulators to better understand the perspectives of people with diseases such as lupus so they can better assess the risks and benefits of drugs under review.

To learn more about this historic meeting, click here.