Monday, September 14, 2009

I'm in DC for Lupus because...

September 15, 2009 - Lupus Research Institute Capitol Hill Advocacy Day!

I am in Washington, DC today because I have Lupus. I am doing what I can and then some. I never would have thought that the diagnosis of a chronic illness would be the start of a journey that took me from long suffering Lupus patient into an advocate on Capitol Hill.

I have lived with Lupus for more than a quarter of century. I am here because my husband has generously allowed me to use his frequent flier mileage awards and hotel points to receive this luxury of being able to travel to represent the "patient voice for Lupus Research." I am not paid to be here. I am not a "professional" lobbyist. I am here today because I am passionate about improving the quality of life for those who have Lupus and those that love them.

I am here in Washington, DC because 26 years ago when I was diagnosed with Lupus, my life expectancy was 5-7 years. Since I have been diagnosed with Lupus, the FDA has not approved a single drug treatment for the illness. There are promising new prescriptions drug treatments in the crucial clinical trial phase but until there is a new FDA approved Lupus drug there will not be a cure. I will not stop advocating for patients who suffer from Lupus until there is a cure.

I am dedicated to representing those with Lupus who cannot be here in DC. If you want to be a part of Capitol Hill Advocacy Day join in. If you can pick up a phone, you have a voice. Call your local Member of Congress. Let your voice be heard. If you don't call, who will? You can call your Representative's local office or their DC office. If you don't know the DC office number for your Congressperson, look online or call the Capitol Switchboard, the number is (202) 224-3121.

In my last blog, I got specific about what the LRI (Lupus Research Institute) is asking of Congress. Please read it and when you call feel free to use it as a guideline for asking your Representative to work to make sure that your request is heard. You can call your Senator and tell him/her that you live in his/her home state and that living with Lupus is a challenge you tackle every day.

I feel it is important to lobby Congress to promote the interest of Lupus patients, families and researchers. My favorite part of Capitol Hill Advocacy Day is being able to put a face on the disease. I have Lupus and I vote. I have Lupus and I advocate. With over one and a half million people diagnosed with Lupus in North America, almost everyone knows someone with Lupus. Not all Lupus patients have the strength and ability (whether it be financial or physical ability) to attend the LRI's Capitol Hill Advocacy Day which makes it all the more special for me.

I like knowing that as a participant in Capitol Hill Advocacy Day, I am part of a unified coalition of Lupus organizations working together to do what working alone we would be unable to achieve.

Pictured above the LA contingent attending the Lupus Research Institute Capitol Hill Advocacy Day meeting before the Meetings with Members of Congress! From left: Dorothy Ellis, me (LA Lupus Lady), Linda David Executive Director of Lupus LA, Adam Selkowitz Chairman of Lupus LA's Leadership Council and Elyse Leon-Reyes Patient Services Manager for Lupus LA.


Purple Healers Pres said...

Oh this is wonderful!!! Thank you soo much. I just started a blog on here & can relate to you & the things you do, you made a trip that will take your time & some of your strength to be our voice of lupus & Iam very happy about this.

Needledreams said...

May God give you many many years more so you can continue with such great mission. I wish I could be there doing the same. But I'm not a person that speaks easily. I prefer to work behind the curtain. Always do my little awareness with my work.

Have a great and fruitful stay in DC!