Tuesday, March 22, 2016

ALR and LRI Congressional Briefing: A New Action Plan for Lupus Research. Great things on the horizon!

Last Tuesday, I had the pleasure of attending a congressional briefing on Capitol Hill, something I've never done before. The event, sponsored by the Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI), proved that much is being done to increase the visibility and improve our understanding of lupus. Hooray!

Industry professionals, scientists, doctors, patients and legislators all gathered together, showing a renewed commitment to accelerating research and development for this enigmatic disease.  I was so energized when I left the event; there is so much hope for lupus!!

While the nitty gritty of the new action plan for Lupus is below, and you can read more about it here, here are a few things that got me excited about the future of lupus medicine and research:

Precision medicine: Via video, we heard from Dr. Francis Collins, Director of NIH. I loved hearing that one of the primary goals of lupus R&D today is to, upon diagnosis, project the trajectory of a patient's disease. Can you imagine being able to predict which patient will develop complications, or organ involvement, so that treatment can be given to potentially prevent organ damage or severe side effects from occurring? That's so exciting!

We also heard from Dr. Robert Carter, whose slides are seen here. He talked about the importance of pinpointing biomarkers to be able to make those precise disease determinations.

Patient certainty:  The room was filled with individuals who absolutely believe that while the prognosis for lupus has improved, it could and should be a lot better. It was exhilarating to be surrounded by so many positive, hopeful, undeterred people, several of whom were the chairs of the Congressional Lupus Caucus. Representative Ileana Ros-Lehtinen (R-FL), in particular, talked about improving the certainty for lupus patients, a word that I've never been able to associate with my disease, but sure would love to!  She said:

“Continuing to advance research is a critical goal of the Congressional Lupus Caucus,” said Caucus co-chair Representative Ileana Ros-Lehtinen (R-FL). “The new Action Plan represents a path lined with possibilities for those living with lupus, including my step-daughter. Through her experiences, our family knows how hard living with lupus can be, so I am committed to helping improve the quality of life for those suffering from this challenging disease.”

Training for a cure: Dr. Stephen Katz, Direction of NIAMS, gave a great overview of where the future of lupus research is headed. He said the job today is to train the scientists of the next 20 years, so that we can get closer to a cure. We've all heard that concept before, but when he quantified the years, Deirdre and Bernadette immediately came to mind. In twenty years, they'll be the age I was at the time of my diagnosis. Thinking that more funding today could bring a faster diagnosis, better treatment, and possibly a cure for my little gals, should they need them, makes me so hopeful!!


The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), on behalf of the National Institutes of Health (NIH), recently released the NIH Action Plan for Lupus Research – a new research roadmap on the prototypical autoimmune disease. This comprehensive strategy was developed in response to a request from the Congressional Lupus Caucus and builds upon decades of NIH research efforts, yielding a wealth of new information toward improving our understanding of lupus. Join us to learn about the priority areas that NIH has identified and what it means for patients and scientists. Moderated by Margaret G. Dowd, President and CEO of the Lupus Research Institute.

Thursday, March 17, 2016

LFA DMV Annual DC Summit: Saturday, March 19th. Come say hi during my panel discussion!!

Looking forward to participating in this Saturday's 2016 DC Lupus Summit at GW University! 

The LFA DMV once again has a great line up of speakers planned for the day of lupus education and discussion.  I'll be there for the day, setting up shop with my Pillbags and books, as well as joining Dr. Vicki Shanmugam as a patient panelist during one of the afternoon break out sessions. A similar panel discussion took place at the Maryland Summit last fall, and I'm looking forward to another candid, lively discussion, especially from the crowd!

Below is the agenda for the event. I hope to see you there!

Click here to register.  The LFA DMV has worked hard to make this event free to all who attend, and you can reserve a box lunch for an additional fee. 

20th Annual Washington, DC Lupus Summit
Saturday, March 19th, 2016
8:30 a.m. - 3:30 p.m.
George Washington University, Marvin Center
Registration begins at 8:30 a.m.

Opening Plenary: Benlysta, Future Treatments and Clinical Trials
Christopher Collins, M.D. 
Warm Up With Yoga
Lorena Lues, CHHC, RTY-200, CPRP, CTRS
Lupus 101: How to Live Longer and Better With Lupus
Donald Thomas, M.D., FACP, FACR, RhMSUS, CCD
Drawing for the Giveaway - The Lupus Encyclopedia
Breakout I
Prevention of Heart Attacks and Strokes
Tara Dall, M.D.
Breakout II
Men and Lupus
Howard Hauptman, M.D.
Breakout I
Eyes, Lupus and Plaquenil
Jonathan Solomon, M.D.
Breakout II
Lupus and the Skin
Benjamin Lockshin, M.D., FAAD
Breakout I
Patient Perspective Panel
Moderator: Vicki Shanmugam, M.D.
Sara Gorman, Lorena Lues, Kristine Prentice, Jamarr Shareef, Amey Upton
Breakout II
Infections and Lupus
Rodolfo Curiel, M.D.

Friday, March 11, 2016

If they gave away a t-shirt with every lupus diagnosis, this is what it should say:

Found this shirt while I was browsing the other day. I had a few more minutes to shop before my nap, but decided to head home instead. I simply couldn't ignore this blatant reminder!

And from the PatientsLikeMe stat below on lupus fatigue, it looks like I'm not alone, either: 


If you're living with #lupus, connect w/ more than 17,000 others like you on PatientsLikeMe. https://t.co/8SjyJJLKFt pic.twitter.com/6xEzdvrcGd

Wednesday, March 9, 2016

Upcoming Lupus Gala - Eye On Design event to benefit LFA DMV. Support the cause in a big way today!

I am thrilled to be part of the 1st annual LUPUS: Life's Untapped Potential in US gala, set for May 13th in Silver Spring, MD. The event is a third-party fundraiser for the Lupus Foundation of America, DC/MD/VA Chapter, and will include the premiere of the short film/documentary entitled "Awake + Risen", dinner, music and a fashion show.

Below is the trailer for the documentary. It was a pleasure to be interviewed alongside other lupus patients equally as passionate about lupus as I am, and I look forward to seeing the final film in its entirety.  You can check out more about the event at the Eye On Design website here and purchase tickets here

The event is formal dress, and does include dinner. All proceeds will be donated to the Lupus Foundation of America, DC/MD/VA Chapter, Inc:

WHEN:  Friday, May 13, 2016 from 8:00 PM to 11:30 PM (EDT)
WHERE:  Silver Spring Civic Center - 1 Veterans Place, Silver Spring, MD 20910

Want to know who's who in the video?


Kamanta Villaman:  Lupus Advocate
Taneice Chavers:  Founder of Shear Bliss Hair Lounge and Spa, a hair salon which provides specialized services for those coping with traumatic hair loss.  
Kelly D.: Lupus Advocate and "Overcomer."  Her inspirational story has led to the development of the nonprofit The Kelly Fund for Lupus, Inc. 
Natica Apau:  Lupus Advocate and "Overcomer." Founder of New Leaf Real Estate Group
Greg Lewin:  Lupus Advocate and "Overcomer."
Sara Gorman:  Lupus Advocate and "Overcomer."  She is also an author and designer/creator of Pillfold, a fashionable solution for carrying your medication.  Check out the entire collection!  Her story is an inspiration to many. 
Shanelle Gabriel:  Lupus Advocate and "Overcomer." She is also a HBO Def Poet and singer.  
Dr. Donald Thomas, Jr., MD:  He is a board certified rheumatologist, who is also the author of The Lupus Encyclopedia .