May. 16, 2017

Becoming My Own Advocate

By Toni Grimes

Attending the Lupus Foundation of America’s National Policy Summit for the first time in 2011 opened the door to an entire network of lupus advocates and a nationwide support system. I was diagnosed with lupus in 2007 and the Summit was the first time that I had been surrounded by hundreds of others who were experiencing the things that I was going through and truly understood the impact this disease has on your physical, emotional and mental well-being.

I have attended three Summits since 2011, which has enabled me to create a strong support network of lupus advocates nationwide. I don’t know many people in my everyday life that have lupus so being able to build relationships with others who have lupus has been critically important. It makes a real difference to have people that I can reach out to and lean on for support. 

The Summit is where we can fight for the resources needed to put an end to this disease.

Not only does the Summit provide a great opportunity to meet others going through the experiences that you are, it also gives you the chance to speak with your elected officials about the brutal impact of lupus and the need for increased funding for research and education.

Those of us with lupus know how important it is to be our own advocates on a daily basis and we need to bring that same passion and drive to the Summit where we can fight for the resources needed to put an end to this disease.

I hope you will join me in Washington, D.C. on June 26-27 to meet with your representatives to share your story and explain the severity and impact of this disease. 

We can’t stand by and wait for others to fight for us. We need to be the champions of this effort and lead the fight to ensure funding for lupus research and educational and awareness campaigns.

Have you registered to attend this year’s National Policy Summit? The Lupus Foundation of America has put together an exciting program and schedule of activities for the Summit, which has a direct and significant impact on people living with lupus and their families. This empowering two-day event provides direct access to the very leaders who are funding and implementing programs to advance lupus research, education and awareness. Take advantage of this opportunity to share your story and educate Members of Congress about lupus, urge them to join our cause, and do more in the fight to end this cruel disease.