Proud To Be A Lupus Advocate From Home

 

I have Lupus. I am passionate advocate for Lupus Research and Education. I have been to Washington, DC twice as an advocate for “Capitol Hill Advocacy Day” but this year I will not be able to attend in person. It is expensive to travel to the East Coast and this year I was unable to make the trip. Yet I am still able to advocate from home. As a stay-at-home Lupus advocate (because not everyone has the physical or financial ability to make the trip) for both the 2011 Lupus Foundation of America Advocacy Day (last week) I did what I could from the comfort of my home and laptop. I called the office of my new Congressperson, I called and spoke with the Health LA’s (LegisIative Assistants) and then I tweeted about who I called and what I said. I shared my story and you can too. The Lupus Research Institute Capitol Hill Lupus Advocacy Day is having Advocacy Training on March 14th, Advocacy Day on Capitol Hill on March 15th.

It is simple and fun to participate. If you want to be a part of Capitol Hill Advocacy Day join in. Pick up a phone, and you have a voice. Call your local Member of Congress. Ask to speak with the Health Legislative Aide and tell your story. If you don’t call, who will? You can call your Representative’s local office (within your homestate) or their DC office. If you don’t know the DC office number for your Congressperson, call the Capitol Switchboard, the number is (202) 224-3121. Once you’ve told your story, share your story on Facebook and Twitter, shout to the world that you are a part of Lupus Advocacy.
Don’t worry about what to say when you call your Senator and/or Congressperson. Tell the person you are speaking with that you are a constituent who lives in your state and that living with Lupus is a challenge you tackle every day. Be truthful about your struggles. Ask the person you are speaking with if they know “someone with Lupus” most of them will as over 1.5 million people in North America do. Tell Congress to support Lupus Education of Medical Professionals, which could help Lupus patients diagnosed sooner. Tell Congress to support Lupus Awareness programs like “www.couldihavelupus.gov

It is important to tell Congress to promote the interest of Lupus patients, families and researchers. With over one and a half million people diagnosed with Lupus in North America, almost everyone knows someone with Lupus. I am proud to represent the Lupus community and so should you. Speak up and share – like living with Lupus, it may not be easy at first but is better than the alternative.

Article written by Staff Writer, Amanda Greene

Amanda is finding the joys of Lupus. She was diagnosed with Lupus and APS at 15 years old, now as”LA Lupus Lady” is an advocate for Lupus Research and Wellness. Amanda enjoys proving that Lupus Awareness is fun! Find her on Twitter @LALupusLady or at www.lalupuslady.com

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Do you have ideas of how you can be a lupus advocate from home?  Do you have “scripting” to help others know what to say when they are on the phone? Help others by posting below.

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