June 29, 2015

Tiffany's Back, ALRIGHT!

*tosses glitter*

Huzzah! Yes, the title of this post should be screeched at ridiculously high pitched volumes in the style of the famous Backstreet Boys song from my tween days. How have YOU been!? I've been so busy lately but I can't wait to share what I've been up to with you.

2015 has been such a great year for Lupus. Clinical trials are on the rise. Studies focusing on how Benlysta affects people of color are currently in effect so if that applies to you please speak to your doctors about participating in a clinical trial and help provide accurate research that can lead to a cure! You can find more information about this clinical trial here.

Lupus Patient Advocates at the #GSKsummit

In May I attended the 1st Lupus Summit held by Pharmaceutical company GlaxosmithKline (GSK). It was an amazing experience! I was surrounded by so many familiar faces from the online Lupus community. Shanelle Gabriel (@ShanelleG), Amanda Greene (@LaLupusLady), Sara Gorman (@DespiteLupus) and many others. Together we sat down with GSK and discussed how they can help improve the lives of the 1.5 million Americans who are affected by Lupus. I'll be sharing a full transcript of the event later this week so keep your eyes peeled for that!

Representative Daniel Donovan Jr & I at Capitol Hill in DC
This June The Lupus Foundation of America brought patients to Capitol Hill in Washington, DC to speak to their state representatives and senators about approving NIH funding for Lupus research, approving the 21st Century Cures (H.R.6), and joining the Congressional Lupus Caucus.
Representing New York City I attended meetings and spoke with Senator Charles Schumer, Senator Kirsten Gillibrand, and Representative Daniel Donovan Jr. Each of them expressed heartfelt commitment to supporting lupus advocacy and research. I look forward to connecting with my local representative Daniel Donovan Jr. since we're in the same borough of Staten Island! He was very patient and asked so many questions that I truly felt that his concern was genuine. You can see all the wonderful people who joined the LFA Advocacy Summit via YouTube here.

Being able to share my experience of living with lupus with the hope of improving patient lives globally truly drives me each and everyday as an advocate. Speaking up and showing the world what daily life is like can be scary! There will always be "trolls" who will try to judge, ridicule, and push you into a dark corner. Just remember that your voice DOES matter and each time you speak up, a lupus sister/brother feels less alone!

Are you also an advocate for Lupus? Did you raise awareness this year? Tell me how in the comments!

Glittery Hugs,
Tiffany Marie