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/
Share this post on Facebook and with your friends and family!
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
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!
Over 2,000 people with lupus have submitted their saliva to 23andMe for DNA testing for the lupus study they are conducting. Though they are still short of their goal of the 5,000 people they need to start their analysis.
Last fall, I signed up and received my kit in the mail. There is health information to fill out, and you have to submit a vial of saliva (which is much easier than you would initially think). For participating in this study you receive your test kit for free! In fact, by filling out a few follow-up health surveys I have received Amazon gift cards just for my time. However, this is nothing compared to what I have received by learning about my genetic makeup, and the information they will hopefully find out about lupus.
While they are finding new lupus genes, I hope you will consider participating in this study. Check out 23andme.com/lupus. It is SO important to have more studies done on lupus and the genetic components of this disease. We need to find a cure. I’m one of the lucky ones who, at this point in my journey, has a mild case that is not life-threatening. But, there are still 10-15% of people with lupus who will die prematurely due to this disease. Please, if you have lupus, go to the website and just do some research: 23andme.com/lupus.
Let’s get closer to a cure!!
If you don’t have lupus, but would still like to have your DNA tested, you can still order your kit today! <<referral link!!