Entries in Advocacy (9)


The First Time...

My first time... Once I realized that WEGO Health did not want a personalized detailed description of my first "encounter", I started to think about what first time would I share for the Health Activist Writer's Month Challenge.  I thought it should have something to do with Lupus.  After thinking about it, I decided to share my "first time" as an advocate for Lupus Research in Washington, D.C.  The first time I went to Capitol Hill Advocacy Day changed my life.

After living with Lupus for 25 years, I was finally using my voice to speak up for patients and families whose lives are affected by Lupus every day.  The first meeting of the day was with the Health Legislative Assistant for California Senator Barbara Boxer.  I was so excited; as I shot my introduction to the YouTube video, I was practically jumping up and down.  I experienced the power and joy of what it was to have someone listen.  As an American, I was proud.  As I told my story to staffers and a few members of Congress, I felt that I truly was making a difference.

I learned that using my voice and telling my story was empowering and helpful to myself and others.  When I returned back to California after my trip to Capitol Hill, I did not stop advocating.  I continue to share my story and support the Lupus community.  I discovered that my story was not unique.  There are too many patients suffering with Lupus.  My journey to Washington was the first step on my path.  The path became a road -- the road to wellness and thriving with Lupus.  My first time was not my last.  I hope that one day you feel the power that comes from speaking about issues that concern you with your "representatives"; you don't even have to travel to Capitol Hill to do so.  Every member of Congress has a local district office.  Call them; ask to speak to the Health Legislative Aide (Assistant).  Be nice, but be firm and speak your mind.  You have a vote and your voice matters.

from left: Dory Neilinger, me (Amanda; aka "LA Lupus Lady"), California Senator Barbara Boxer and Linda David.

I have been calling the local and D.C. offices of my Senators and Congresswoman once a week for the past month because there is a new Caucus on the Hill and I want my representatives to know how the voters feel.  I want my Senators Barbara Boxer and Dianne Feinstein ,as well as Congresswoman Karen Bass ,to join and support the Congressional Lupus Caucus  My advocacy for Lupus and Lupus Research will never end...until there is a cure.

Here is the YouTube video I made of my first Capitol Hill Advocacy Day.


A lot can happen in a week.... living my best life "Oprah Style".

It was a week ago tonight that Oprah Winfrey tweeted "Lupus"!  I like to share that Lupus Awareness is Fun and sometimes my passion and purpose are mistaken for being "more than a little loopy" but when I saw the tweet from @Oprah to @LAlupusLady I must admit I screamed.  Then I thought I was being punked.  Did Ashton Kutcher (@aplusk) have something to do with this? 

You see when Oprah and the Harpo Team started live tweeting on Sunday nights. I knew I could grab their attention.  I just hoped my passionate dedication wouldn't be seen as a security risk and my husband imagined Sheri Salata (Oprah's Executive Producer, @SheriSalata on Twitter) calling the FBI with my Twitter name and email address.  I went Twitter crazy using and I admit it abusing the #OprahLiveTweet hashtag.  I was tweeting everyone I could find who worked at Harpo and hoping against hope that the lady O, Oprah herself would at least be talking about the "loopy Lupus Lady from LA" and then it happened.  I got a response from @Oprah!

I barely had time to celebrate that I indeed helped get Oprah into the loop for Lupus.  Because I was preparing for Passover Seders and peeling apples and thinking about how so many people are enslaved in various ways.  I shared with Oprah how people with Lupus are enslaved every day by their disease.  I shared with Oprah that when I met her briefly at a party during the Democratic Convention in Chicago during the summer of 1996, it was a moment that stuck with me and led me on my path to Lupus Wellness Advocacy.  I shared with Oprah what I wanted to share with Oprah.  So I wasn't in front of the cameras.  I did what I really wanted to do.  I wanted to share, connect and engage Oprah in proving that Lupus Awareness is Fun.  Even though there may not be an Oprah show about Lupus, I know that I shared my passion and purpose with Oprah.  Oprah knows that Lupus Awareness is Fun!

As Oprah moves on and my dream of appearing as an ambassador for Lupus patients on The Oprah Show fades I feel a new dream forming and with it the "Next Chapter" of my life.  I am grateful that I shared a Twitter moment with Oprah.  I have been smiling all week long, whenever I think about dreams, goals and visions.  I believe that anything is possible, if you want it enough!



Lupus Awareness Month aka 31 Days of Fun!

If you read my blog or follow me on Twitter you may already know that I like to share that Lupus Awareness is fun because it is important.  But did you know about the Lupus Initiative and the Lupus Story Bank? My first advocacy day on Captiol Hill is one I will never forget.  During the training session and workshop we "lobbyists" learned about the specific programs we were fighting for and asking for Congressional support.  One program that we asked for help in creating and funding was The Lupus Initiative.  

As a patient advocate it was disheartening to find out that many medical professionals don't know how to diagnose Lupus.  One of the program goals of the Lupus Initiative (which is a federal activity of the Offices of Minority Health, Women's Health, and the Surgeon General of the US Department of Health and Human Services. Under a cooperative agreement, the program is managed by The American College of Rheumatology) is to educate medical professionals about what Lupus is and how to care for the patients who live with Lupus every day. 

It is my honor to let you know that Congress supported funding and The Lupus Initiative is supporting education for medical professionals.  One way is through the creation and development of The Lupus Story Bank a place for Lupus patients to share their stories with the health care professionals who care for them (us: Lupus patients!)  

Here is my contribution to the Lupus Story Bank for the Lupus Initiative and May 2011 Lupus Awareness Month


Lupus Advocacy is Fun.

I feel it is important to share why I am a proud Lupus Advocate and why I think Lupus Advocacy is fun.  So I wrote an article about it...


Lupus Advocacy is important!

I know what it is like to go to Washington, DC to advocate for Lupus Research.  I remember the exhaustion... I remember the sore feet... and I remember why I did it.  I went to our nation's capitol because over 1.5 million Americans have Lupus.  Lupus is one of the lesser-known major diseases in the United States, Lupus is an autoimmune disease that effects each individual patient differently.  If I was on Capitol Hill today I would be joining the team of Lupus Advocates that are meeting with members of Congress, (or more likely, a Health Legislative Aide) today to discuss the importance of funding Lupus medical research by telling my story of what living with Lupus has been like for me the past 28 years.  I would tell you that it may not have been easy but it was "much better than the alternative".

If you have Lupus or someone you know has Lupus.  Please raise your voice and let your Senators and House members know that you are a constituent who is an advocate for Lupus and you vote.  Let your voice be heard...

The Lupus Foundation of America is going to Capitol Hill today to ask for:
Increase funding for Lupus Medical Research at the National Institutes of Health (NIH).
Fund the establishment of a Lupus Medical Research Program, established under the Congressionally Directed Medial Research Program (CDMRP), Defense Health Program (DHP), Department of Defense (DoD).

Continue funding for:

The National Lupus Awareness Campaign at the U.S. Department of Health and Human Services' Office on Women's Health (OWH) which increases public awareness of Lupus in order to increase early diagnosis of Lupus.

The Health Provider Education Campaign at the U.S. Department of Health and Human Services' Office of Minority Health (OMH) which increases health professional providers' awareness of Lupus to improve Lupus diagnosis and treatment.

Lupus has a tremendous financial cost to the nation, estimated at $31.4B annually, but the cost of inaction will only make those numbers grow.  We cannot afford to wait.