We have an amazing opportunity through a Lupus Patient-Focused Drug Development (LPFDD) meeting happening on September 25.
The Lupus and Allied Diseases Association, Lupus Foundation of America and the Lupus Research Alliance are joining together to host this meeting which will be driven by people like you and me who have lupus, and also caregivers to individuals with lupus. The meeting will help inform the FDA about what it is like to live with lupus daily, and also what kind of treatments we would like to see in the future.
Even if you don’t live in the area, you can attend the meeting online to participate. BUT even if you can’t attend, there is a survey for you to fill out. There you can tell your story, voice concerns and give your take on new treatments. This survey will help with the planning of the meeting and also to form a report to the FDA. They are trying to get as many people with lupus as they can to fill this survey out, so please fill it out and share this with your friends and family so they can pass it along.
We are being given a great opportunity to have our voices be heard by the FDA and I hope we blow them away with the response from our community! We need to make noise! There is a critical need for more research, new treatments and ultimately, a cure — and this is one way we can work towards this.
Please fill out the survey and if you are able, attend the meeting (whether in person or online).
Participate here: https://lupuspfdd.org/participate/
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Need to know exactly what lupus is? Go to: What is Lupus
I’m Putting on Purple today, are you?
Posted in Awareness, Lupus
Tagged auto-immune disease, autoimmune, autoimmune disease, lupus, lupus awareness, lupus awareness month, lupus awareness month 2016, pop 2016, Put on purple, put on purple 2016
I ran my third 5k of the year today. My objective was just to finish as I had a tough time at my last 5k. I finished, but it was tough!
I kept having to give myself pep talks as I went along. I tried to think of every mantra that would keep me going. I didn’t stop, I didn’t quit. I refused to not fight.
With lupus, we do this every day. Whether you feel strong or not, you are strong. Stronger than you know. Stronger than the average healthy human. You’re still here. You’re still fighting.
Lupus sucks. It makes for hard days. But we don’t stop. We keep going. We are going to keep going until they find a cure.
I didn’t stop today. No matter how slow I was, I kept going. I kept telling myself I was STRONG. I FIGHT.
Feel proud, you are a fighter.
If you live in the southwestern Missouri area (or know someone who does) I hope you will join me this Saturday the 14th for Midwest Technical Institute’s 1st Annual P.O.P. for Lupus 5k Walk/Run in Springfield, Missouri.
Feel free to come and walk, or run with me and help raise awareness for lupus!!!
Check out the Facebook page: https://www.facebook.com/events/956642067718220/?ti=cl or sign up directly at https://runsignup.com/Race/MO/Springfield/MTIPOPforLupus5k. I hope I will see you there!!
Outside of the tv show House, most people have never even heard of lupus. We need to change that!! -Erin
Lupus is one of the cruelest, most mysterious diseases on earth—an unpredictable and misunderstood autoimmune
disease that ravages different parts of the body. Research shows lupus is more pervasive and more severe than people think, and has an impact that the public doesn’t realize. You can change that! Help the Lupus Foundation of America raise awareness of lupus and show support for those who suffer from its brutal impact.
On May 20th, Put on Purple™ to show your support for the millions of people affected by lupus. It’s an easy way to raise awareness about this cruel and mysterious disease. Learn more by visiting lupus.org/putonpurple and submit your photos at putonpurple.tumblr.com!
-From the Lupus Foundation of America
Head on over to WorldLupusDay.Org and sign the petition to help make lupus a priority for the World Health Organization!