Tag Archives: Lupus Foundation of America DMV

Lupus Has Many Voices

As a teen with lupus, I felt very alone, like I was the only person my age with the disease. But teen lupus isn’t actually that uncommon. According to the Lupus Foundation of America:

Lupus develops most often between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these cases can evolve more rapidly into serious health complications.

Yesterday I added my “Voice” to the LFA’s online album of lupus stories. I shared my Butterfly Lessons philosophy and a brief snipped of what my life as a teen with lupus was like. Please check it out at http://bit.ly/JIOAcy and add your own story.

Take care and share your voice,

Katina Rae Stapleton


A Six Sentence Story about Sigma Gamma Rho Sorority, Inc. and Lupus Awareness (HAWMC #29)

Today’s Health Activist Writer’s Challenge Month assignment was to write a six-sentence story. I decided to write mine about how my sorority, Sigma Gamma Rho Sorority, Inc., has helped me raise awareness about lupus in the Washington, DC metro area.

Katina (2nd from the left) with sorors from her undergraduate chapter of Sigma Gamma Rho Sorority, Inc. at the DC Walk for Lupus Now!

One day not-so-long ago, Katina Rae Stapleton discovered that her sorority sister from college worked for the Lupus Foundation of America, DC/MD/VA chapter (LFA-DMV). Katina’s soror encouraged her to become involved in the LFA-DMV and later recruited Katina to become the 2011 DC Walk for Lupus Now Co-Chair.  Other members of Katina’s undergraduate and graduate chapters of Sigma Gamma Rho Sorority Inc.  supported her by walking in DC and Baltimore to increase awareness of lupus. One evening last year, Katina went to a social networking meet-up hosted by the Black Public Relations Society of Washington, DC.  At the event, Katina met her soror Ananda Leeke and later wrote a guest-blog on lupus & social networking for Ananda during Digital Sisterhood Month. At the meet-up, Katina also met her soror Kamaria T. Richmond, who later invited her to talk about lupus on the upcoming May 6, 2012 Stroke Diva Fabulous Show (7:25 pm EST).

Hope you enjoyed my very short story.

Take care,

Katina Rae Stapleton

Making Lupus Divalicious with Ebonique Jones

Over the past year, I have enjoyed meeting people across the DC/MD/VA area as I have talked about Lupus awareness. It has struck me how many people’s lives have been by touched by the disease. At one public speaking event, I had the good fortune to meet Ebonique Jones, owner of Divalicious Sweet Treats, a DC custom cake company. Ebonique’s father suffered from Lupus before he passed away in 1997. In his honor, Ebonique approached me about using Divalicious Sweet Treats to help raise awareness for the disease. One thing led to another and Ebonique became a cupcake sponsor of the 2011 DC Walk for Lupus Now and walked alongside Team Butterfly Lessons.

I asked Ebonique why she felt it was so important for her to walk and help raise awareness of Lupus. She said:

 “I know first hand how this disease not only cripples the patient’s ability to move and get around, but also the family members who try to do everything to their ability to do what’s necessary to care for their family member. When my dad was diagnosed I truly didn’t understand the disease, but I do remember some days he couldn’t get out of the bed. It was heart breaking to see him that way, but my mom did her best to make sure he didn’t want or need for anything. I think it’s important that families get the help and support they need to battle this disease. So I wanted to do my part and give back to the community and help raise awareness for this cause.”

Ebonique Jones (right) shows her Divalicious Butterfly Spirit at the 2011 DC Walk for Lupus Now!

I feel blessed that I was able to meet Ebonique and that she has been able to lend her unique talents to the Lupus Community.

Take care,

Katina Rae Stapleton

P.S. If you live in the DC/MD/VA area and would like some Divalicious cupcakes, check out Ebonique’s website (http://sweetdivatreats.com). 

Hot off the Press! Butterfly Lessons Founder is in the Washington Informer!

I’ve had such a great time as the Co-Chair of the 2011 DC Walk for Lupus Now! One of my most important goals was to raise awareness of the disease in the DC Metro area.  Today I am featured in the Washington Informer on page 17.  Click on the picture below to read the advertorial.  I think it’s fabulous (if I do say so myself)!

Katina Rae Stapleton

"Living with Lupus", The Washington Informer, April 14-20,2011 Edition, pg. 17


Butterflies sure know how to party!

I had a great time tonight at the Lupus Foundation of America, DC/MD/VA chapter’s annual Butterfly Party! Volunteers bonded together over pizza, soda, and ice cream, while we helped the chapter prepare for this Saturday’s 2011 DC Walk for Lupus Now! Who knew that all of those paper butterflies didn’t come pre-assembled . .  . . .

If you are interested in walking with Team Butterfly Lessons, there is still time to sign up to walk with us this Saturday! As on 10:00 pm today (April 12, 2011), Team Butterfly Lessons has 11 walkers who have raised just over $1800.  Additional donations are always welcome.

Thanks to everyone for your support. Without you this walk would not be possible.

Take care,

Katina Rae Stapleton



McCulley’s Miracle by Guest Blogger Liz Murphy, 2011 DC Walk for Lupus Now! Team Leader

Just one year ago my sister Cathy and I teamed up for the Walk for Lupus Now in Washington, DC. After being diagnosed three and half years ago, Cathy died from complications from Sjogren’s Syndrome and Lupus on January 31, 2011. For those of you who met Cathy, you know she was courageous throughout her disease. She always had a broad smile and a big hug for everyone she met. She doled out lots of both during last year’s Walk despite the fact that she was constrained by a wheelchair and her oxygen tanks. Nothing seemed to get in the way of Cathy living fully and sharing her love for life with others.

I’ve named my new Walk team McCulley’s Miracle because my sister, Cathy McCulley, lives on through the little miracles her life helps to create each day. She is an inspiration to the family she has left behind. Her story was a wake-up call to the FDA as they considered whether to approve the first new drug for lupus in 52 years. And through contributions made in her honor to the Walk, she will continue to help to improve the lives of lupus patients and their families.

Why do I walk? Because there are far too many lupus patients who can’t, and by walking I can keep hope alive for all of them as we increase awareness and shine a light on a disease that truly needs more attention.

Liz Murphy


Elizabeth “Liz” Murphy is the Chair of Board of Directors of the Lupus Foundation of America, DC/MD/VA.


Liz (L) and her sister Cathy (R)

Her walk team McCulley’s Miracle was formed in honor of  Liz’s sister Cathy, who recently lost her battle with Lupus. Help Liz’s team meet (or even exceed) their $10,000 goal. Join her on April 16, 2011 at the 2011 DC Walk for Lupus Now!

Life, Lupus, & Living by Guest Blogger Edie Aultmon, DC Walk for Lupus Now! Team Leader

Lupus, I had never heard of it; until I was diagnosed with it.

Fevers, aching swollen hands and knees, infections, hair loss, pleurisy and more were all symptoms of lupus.  I wrestled with this disease for two years before anyone would figure out that I had Systemic Lupus Erythematosus.  I started off taking three pills a day in 1984, and now I have graduated to 16; unfortunately, the more areas of the body that lupus affects, the more pills you have to take.  I knew that I wanted to be in control of my life; I refused to let lupus control my life.  I started learning everything I could about lupus, and how it works its way all around the body inside and out.

I made up my mind to be my own person, I have always been strong willed and determined to have my own way.  I fought back by exercising more often, getting enough rest, being careful about the foods that I ate and preparing my own food.  There are many things that I had to modify in my life but it has been worth it.

I would like to see lupus patients fighting back to regain control of their lives too.  Life was meant to be lived…to the fullest.  I focused on being positive minded, and being around positive minded people was the key for me.  I try to keep myself busy so I don’t have time to think about having lupus.  I happen to like being in control of my life, and I want to keep it that way.

I have known lupus for a long time now; it has tried many times to hinder my efforts in maintaining a normal life.  I have refused to cooperate and I shall continue to be uncooperative.  I will be walking for lupus on April 16, and there will be many others walking with me spreading lupus awareness everywhere we walk.

Edie Aultmon


Edie Aultmon is the leader of DC Walk for Lupus Now! Team Non-Stop.Please help support her team goal of raising $2,500 for the April 16th walk.

Edie is also a health fair advocate and can be found teaching people about lupus across the DC metro area. Edie currently works full time as a Project Manager in the EPA Mail Center.

If you would like to hear Edie talk about living with lupus, check her out on the Lupus Foundation of America, DC/MD/VA video Chasing Butterflies.

Butterfly Social – 2nd Annual Team Kickin it 4 Krista Happy Hour on 4/7/11

This year I have been honored to work as the co-chair of the DC Walk for Lupus Now with Krista Blackburn.  Krista’s Team “Kickin it 4 Krista” is a walk Rock-Star.  Her Team has already raised approximately $15,000 for the Lupus Foundation of America DC/MD/VA chapter. But to meet the team goal of raising $20,000 she needs our help!   Katina Rae Stapleton

An invitation from Krista:

Please join us in supporting a great cause at the 2nd Annual Team Kickin it 4 Krista Happy Hour at The Front Page in Arlington, VA with all proceeds benefiting the Lupus Foundation of America DC/MD/VA.  The event is Thursday April 7th from 5-9pm. $5 wristbands at the door will get you the following food and drink specials:
  • $3 off appetizers
  • 1/2 price burgers
  • $4 shooter special
  • $2.75 rail drinks
  • $3 drafts
  • $3.25 glasses of house wine
  • $2 miller light bottles
Be sure to stick around for the raffle which includes Washington Wizards tickets, gift cards to numerous restaurants in the Ballston/Clarendon area, and other great prizes.  DJ Pat Premier http://patpremier.com/ will be keeping the music going and making sure the party doesn’t stop!  Come on out and help support a great cause! See you all on April 7!


New Guest Butterflies: Edie Aultmon and Liz Murphy of the LFA-DC/MD/VA

I am very excited to be counting down the last two weeks before the 2011 DC Walk for Lupus Now! on April 16, 2011. As you know Team Butterfly Lessons will be in full effect at the walk. But we are certainly not the only team that will be there to raise lupus awareness and funds for the Lupus Foundation of America, DC/MD/VA chapter.

I am very excited that two fantastic walk team leaders will be guest blogging this week on the Butterfly Lessons blog. Both have an incredible story about how lupus has touched their lives.  On Monday, we will here from Edie Aultmon, of Team Non-Stop about living with lupus and on Wednesday, Liz Murphy of Team McCulley’s Miracle, will be share her story in honor of her sister Cathy, who recently lost her battle with lupus.

This week Butterfly Lessons will also give a shout to Krista Blackburn, my walk co-chair and leader of Team Kickin’ it 4 Krista. Krista’s team is close to raising $15,000 for the walk. I hope the DC metro Butterfly Lessons family will join Krista for her Happy Hour on April 7th in Arlington, VA.

Take care,

Katina Rae Stapleton


This One’s For You: 2011 DC Walk for Lupus Now! by Guest Butterfly Penelope Fletcher, president of LFA-DC/MD/VA

I am so pleased to be a ‘guest blogger’!  The first DC Walk for Lupus Now was in April 2007, and we had 500 people walking on the sidewalks, because we weren’t big enough to close the street.

On April 16th, we hope to have 3,000 people walking down Pennsylvania Avenue carrying butterflies and spreading lupus awareness – that’s so exciting to us at the Lupus Foundation of America, DC/MD/VA Chapter.  This is the biggest lupus event that will happen in this area in 2011.  Time and again, people tell me that when they walk, for one day they realize that they are not alone in their fight against lupus – they know that there are other people who understand and who want to find the same answers that they do.  Lupus is often a lonely disease, but not on April 16th in Washington DC!

People who know me know that I often think about my mother who died 6 years ago of complications of her lupus and the toll that the drugs had taken on her body over the decades.  During that first Walk, on a bright sunny beautiful DC spring day, I looked up at a crystal clear sky and thought, “This one’s for you Mom!”  I still have that thought at the start of each Walk, how much she would enjoy seeing all those people who share the same mission.  The difference for this Walk though is that for the 5th Anniversary Walk, I’ll also be thinking of so many other people that I have come to know and care about.  This one is for each of you, because with the money we raise we will be able to provide a year’s worth of education and workshops and services.  We couldn’t do what we do without each person who walks and donates – so truly, this Walk is for each of you who live with this terrible disease, it’s a salute to your courage and your perseverance – thank you!


Penelope “Penny” Fletcher is the President and CEO of the Lupus Foundation of America, DC/MD/VA chapter (LFA-DC/MD/VA). The chapter’s mission is to  find the causes and cure for lupus and to provide support and services to all people affected by lupus. The LFA-DC/MD/VA provides services in the District of Columbia, Maryland, and Central and Northern Virginia, including offering current information about lupus, education programs, support groups, and personalized help with the questions that arise for those living with lupus and their family and friends. The chapter also support research and promote lupus awareness. To learn more about what the LFA-DC/MD/VA chapter is all about, watch the chapter video: Chasing Butterflies.

For more information, contact: LFA, DC/MD/VA Chapter, 2000 L Street NW – Suite 732, Washington, DC 20036; Phone: 202-349-1167 or  Toll-free in DC, VA, MD, WV: 888-349-1167; Email: info@lupusdmv.org