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Wednesday
Jun242015

Good Times at the Annual Lupus Summit in DC (with the Lupus Foundation of America)

Much thanks to the awesome folk at the Lupus Foundation of America for the invitation to be a part of the Annual Lupus Summit on June 15th & 16th. I was able to meet with State Representatives and Senators to truly advocate for things that matter to Lupus.

Some point of reference, check out the chart below... Look at the dates for medications that have been approved for Lupus... 1958 and then nothing until 2011. And nothing since then. For 1.5 million Americans (and many many more that are still searching for an official diagnosis), this isn't enough. We need more funding for Lupus and more awareness. Also, the FDA needs to reform its policies on clinical trials. Since Lupus can attack any part of the body, it's hard to expect researchers to find 5,000-6,000 people with the same exact symptoms and specific demographic and medical background which they expect to be done to test new treatments. With these rigid restrictions that were created and haven't changed since decades ago, these requirements are dated and unrealistic for such a complex and unique disease as Lupus.

Glad to have learned soooo much. Also, it was soooo dope getting a shoutout from the Director of the National Institute of Health, Dr. Francis Collins at the oh so lovely Lupus Advocacy Gala. I'm looking forward to advocating next year!

Tuesday
May122015

Speaking about Lupus at the GSK Summit 

Super excited to be here speaking about patient issues and complications with fellow Lupus advocates and bloggers.

Find them on Twitter: @TiffanyandLupus @LALupusLady @MarlaJan @despiteLupus @LupusAdventurer @LupusGuru @QueenofSpain @LeslieRott @cmswrites @LupusChickcom

Tuesday
Apr212015

Join me after work this Thursday 4/23 in NYC

Come unwind for a cause! This Thursday, I'll be hosting "Band Together For Lupus" at TAJ NIGHTCLUB. No cover, drink specials, food and dope DJs. Make a donation to Lupus and sign up for the NYC Walk! See you then!

Saturday
Dec272014

New Video: "MORE THAN ONE OF A KIND"

Hello all!

Check out my new video for my song "More Than One of a Kind." It was directed by Jason Sirotin and Produced by ECG Productions. It features clips from my mini-documentary on Living with Lupus for the Simple Tasks Campaign of the American College of Rheumatology. Share! :)

Thursday
Dec112014

When a message of Unity isn't enough

“If you stick a knife in my back nine inches and pull it out six inches, there’s no progress. If you pull it all the way out that’s not progress. Progress is healing the wound that the blow made. And they haven’t even pulled the knife out much less heal the wound. They won’t even admit the knife is there.”
– Malcolm X

 

It's crazy to see how so many people say "This isn't about race, it's about human rights." Duh... But whose rights are statistically being disregarded in our society? To pretend race isn't a huge part of the problem and isn't what incited these streams of protests in the first place would be disrespectful to those who are over-policed, murdered, and victims of injustice. I'm sure there are asshole cops everywhere, just like I am sure there are good ones. But this fight began as anger against the racism that some who live in a nice, mid to upper class (maybe predominantly White) bubble seem to think doesn't exist. But it's not "segregating" when you recognize there is a serious problem with the way one demographic of people are targeted, victimized, and demonized by the justice system. No one goes to a rally against drug trafficking and says "Yea, and let's promote safe sex." Both causes are important, but as everyone joins the bandwagon, it's disrespectful to change the message that the movement was initially created to address to one that YOU feel is a better issue. Maybe equality for all is more palatable and UNIFYING than saying "equality for all but especially for a group that has historically and is still not viewed as equal", but I don't see why we can't unify in the fight against something that is wrong and has BEEN wrong in our society for centuries.