Tag Archives: Lupus Foundation of America

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

 

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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!


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!

Penny

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

Penelope C. Fletcher, president of the LFA-DC/MD/VA stretches her Guest Butterfly Wings

I am always on the hunt for new Guest Butterflies! This Monday, I will be posting “This One’s For You,” a great blog post about the 2011 DC Walk for Lupus Now! by Penelope “Penny” Fletcher, the president and CEO of the Lupus Foundation of America, DC/MD/VA chapter.

If you are interested in participating in the one of the 2011 Lupus Foundation of America’s Walk for Lupus Now! Events, check out the their main walk page.

To participate in the 2011 DC Walk for Lupus Now! as part of Team Butterfly Lessons, register on our walk page or contact me by email, twitter, or FB.

Take care,

Katina Rae Stapleton

Join me at the Lupus Foundation DMV Annual Gala Luncheon and Auction

On December 11, 2011, the Lupus Foundation of America DC/MD/VA chapter will host its Second Annual Gala Luncheon and Auction!

Last year I went to the LFA-DMV’s very first annual gala and auction and had a fabulous time. I came away with a custom scrapbook and a greater understanding of all that the chapter does for women, men, and children in the DC metro area that live with lupus. One of the highlights was hearing the stories of people who have been helped by the foundation. Many of their stories are contained in our chapter video: Chasing Butterflies.

This year’s auction is sure to be a hit! Please come out if you are interested in helping us raise funds for our Patient Navigation program that helps lupus patients find their way through the complications of our health care system.

Auction items include:

  • A guided tour of the NFL Today set at CBS Studios.
  • A Napa Valley Wine Experience.
  • A Jazz Cruise on the Potomac River.
  • Gift certificates to some of the DC area’s finest restaurants, including Citronelle, Michel by Michel Richard at Tysons Corner, BLT Steak, Ruth’s Chris Steakhouse, and many more.
  • Tickets to the DC area shows and museums, including Arena Stage, Shakespeare Theatre Company, Newseum and many more.
  • Sports memorabilia from the Redskins, Ravens, Nationals, Orioles and Capitals.
  • Weekend and overnight stays at some of the finest hotels around Washington, DC. Weekend packages are available for the Ritz Carlton, JW Marriott, Donovan House and many more.

Tickets are available online at http://lfadmvannualgala.eventbrite.com/. Individual tickets are $125. The event is Saturday, Dec. 11, 2010 from 11:30 am – 3:00 pm (ET) at the Old Ebbitt Grill, 675 15th Street NW, Washington, DC 20005.

For more information, please contact Kassandra Kearse at 202-349-1167 or kkearse@lupusdmv.org

I am my sister’s keeper: Lambda Delta Sigma Chapter of Sigma Gamma Rho Sorority, Inc. Walks for Lupus Now!

Sisters function as safety nets in a chaotic world simply by being there for each other.” Carol Saline

I have been a proud member of Sigma Gamma Rho Sorority, Inc. since 1993. Throughout the years my sorors (sisters) of SGRho have always been extremely supportive of my battle with lupus.

About a year or so ago, my undergraduate chapter (Eta Beta) invited me to a lupus fundraiser. Seeing my little sisters involved with the cause led to my volunteering at the 2009 DC Walk for Lupus Now. In spring 2010, I formed my own team (Metamorphosis) and was joined by two of my sorors from Eta Beta and my parents. Together we raised over $1500 for the Lupus Foundation of America, DC/MD/VA (DMV) chapter. In the picture below we are joined by our soror Kassandra Kearse (2nd from the right), the Development Manager for the Lupus Foundation-DMV.

Sigma Gamma Rho Sorors at the finish line of the 2010 DC Walk for Lupus Now

I am very excited that the sorors of my current Sigma Gamma Rho chapter, the fabulous Lambda Delta Sigma Alumnae chapter of Anne Arundel County, Md. decided to form a 2010 Baltimore Walk for Lupus Now Team. The Baltimore walk is Saturday, September 25, 2010 at Druid Hill Park, Baltimore Maryland.

If you are interested in supporting the Lambda Delta Sigma Walk Team, please sign up to walk or donate at our walk page. For more information about the 2010 Baltimore Walk for Lupus Now, contact Kassandra Kearse.

The Butterfly Lesson for today is in honor of my sisters in greekdom, no matter what sorority you belong to:

“People ask why I am in a sorority and I try to explain all the things a sorority is that they cannot see. A sorority is more than letters on a sweatshirt, I say. More than traditional songs, a gold pin, rituals, and obligation, or a way of life. A sorority is learning about people, a sorority is giving without expecting a return. A sorority is earning respect from others, as well as for yourself. A sorority will not solve all your problems. But I have made good friends and found confidence there to help me take life one step at a time.” Unknown

Take care,

Katina Rae Stapleton

P.S.

This is my last post for National Invisible Chronic Illness Awareness Week . It’s been a great experience. Thanks for checking out my blog posts and all of your kind words and support.

Living a Fabulous Life with Lupus

I am excited to launch my Butterfly Lessons lupus empowerment blog on the first day of National Invisible Chronic Illness Awareness Week. I’ve had lupus now for over twenty years and can testify that having lupus sucks. Fatigue, painful joints, rashy skin, and a host of other symptoms are enough to bring down the spirits of anyone who lives with this autoimmune disease.

I’ve always known other people with lupus, but usually I met them by happenstance.  I hadn’t been to support group meetings or conferences or participated in any lupus fundraising/awareness activities in over 10 years. But in the past year, I had a change of heart and sought out the Lupus Foundation of America (LFA) chapter where I live. Being involved with the LFA has changed my life. I have met many amazing people who share my journey and found understanding, friendship, and comradery. I also found the inspiration to share my lupus story with others in the form of the Butterfly Lessons blog.

My Butterfly Lessons blog is based on the idea that having lupus does not mean having a terrible life. No matter what the disease has thrown my way, I have never lost sight of my dream to have a fabulous life. Fabulousness means different things for different people, but I love these definitions:

Fabulous:

  • “almost impossible to believe; incredible.” – Dictionary.com
  • “exceptionally good or unusual; marvelous; superb” – Dictionary.com
  • “The ultimate expression of enthusiasm and joy. Characterized by wonder, adoration, inspiration, exhaltation, and love.” UrbanDictionary.com
  • “A certain quality that exudes all others. Someone who is truely fabulous has confidence, kindness, sexiness, and a good wardrobe.” UrbanDictionary.com

The Butterfly Lessons Blog will be about the pursuit of fabulousness while living with lupus. You can look forward to personal stories from people with lupus about their successes (and challenges), information on lupus lifestyle choices, as well as advice and coaching. I hope you enjoy it. Feel free to let me know what you think as the blog develops over time. I plan on blogging at least once a week, so I encourage you to check back or subscribe to the blog.

This week I will be blogging every day in support of National Invisible Chronic Illness Awareness Week (September 13-19, 2010) started in 2002 by Lisa Copen. The event features a variety of ways to get involved, including a free virtual conference on September 13-17 with speakers each morning from 10:30 am – 12:00 pm, USA Pacific time. You can also go to the website to download a free 80-page ebook on living with an invisible illness.

Butterfly Lesson of the Week: Why struggle alone? There are many people who are able and willing to help you navigate your lupus journey successfully. Make connections with the lupus support community and never forget that you can still have a fabulous life even though you have lupus.

Two of my favorite lupus support organizations are:

  • the Lupus Foundation of America (LFA), a “national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus” and
  • The Lupus Alliance of America (LAA), a “group of agencies that have come together for the express purpose of providing needed services to those affected by lupus within their local communities.”

In the past year I have had the opportunity to work with both organizations and am touched by the value they bring to people with lupus. They:

  • provide public education about the disease, including helping people recognize the symptoms of lupus.
  • provide support for people with lupus and their families (and caregivers).
  • provide financial support and advocacy for research on the causes, treatment and cure of lupus.

For me, the most important thing that LFA and LAA provide is bringing people with lupus together to form a true community.

Take care,

Katina Rae Stapleton