Lupus Foundation of America, Southeast Florida Chapter

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Lupus Foundation of America
Southeast Florida Chapter

      The Lupus Link Newsletter  
 

 

March 2012  

In This Issue
Spotlight on Research
Everyday Heroes
LFA Support Groups
Lupus Talk Florida...LFA's Online Chat
Clinical Research Studies
Social Butterflies...A Lupus Meetup
15 Questions: Kidney Issues and Lupus
Lupus and the Kidneys Teleconference
2012 Walk For Lupus Now Dates
Michael Jon Barlin Scholarship
Closet Couture Luncheon
Lupus Voices Across America

Quick Links

SPOTLIGHT ON RESEARCH
 

LFA Seeks Research Applications to Advance Science and Medicine of Lupus  

Lupus Foundation of America (LFA) seeks grant applications to advance the science and medicine of lupus and to help improve the quality of lives of all people affected by this disease.  LFA is seeking grant applications to address the following areas of lupus research: cutaneous (skin) lupus, pediatric lupus, adult stem cell transplantation, and neuropsychiatric lupus, which affects the brain and nervous system. Read more...   

 

Read more about how LFA is Advancing the Science and Medicine of Lupus here.

 

Help us to continue to support live-saving research by making a donation today.

 

EVERYDAY HEROES
 
Jen Riccardi
Jennifer Riccardi
  

Unfortunately, many people are not aware of what Lupus really is. I was one of those people until 2003, when I was diagnosed with lupus at the age of 19. In my case, it started off with extreme fatigue and joint pain. I was prescribed a variety of medications but even then, never realized the severity of what this challenging disease was capable of. Attending college, working and trying to have a "normal" social life with my friends became harder and harder to keep up with.

 

After years of several different medications and even a round of chemotherapy, my body stopped responding to the treatments and went into kidney failure. I needed to start dialysis immediately. Because of the time-consuming dialysis schedule, I also had to stop working. I was placed on the kidney transplant list at Jackson Memorial Hospital and in the meantime, family members tested for me in hopes of finding a possible match.  

 

Luckily, I have a wonderful support system from my family and friends. I was never very public about my struggle with lupus but finally in 2010, became more vocal about it. I participated in lupus events and attended both the Lupus and Kidney Walks. A team of friends and I participated in the 2011 Lupus Walk and together raised almost $4,000! Not only was it a great way to raise awareness, but I was able to meet people who shared my struggle and also come in contact with the Lupus Foundation, Southeast Florida Chapter. 

 

In November of 2011, my prayers were answered. A cousin of mine, living out of state, was a match! I had my kidney transplant on November 14, 2011. That was the best day of my life. Now, at the age of 27, I can say that my lupus is currently in remission and I am feeling great after a successful transplant. I am truly blessed to have been given a second chance at life.  

 

Jennifer Riccardi

(from Miami-Dade)

   

Let us know how you made a difference in the name of lupus.  We want to highlight you!

UPCOMING PROGRAMS

AND EVENTS

March 14
Hollywood Support Group

March 15
Boynton Beach Support Group

March 21
Coral Springs Support Group 


Visit our complete online calendar.

LFA SOUTHEAST FLORIDA CHAPTER
SUPPORT GROUPS
 
support groups 3 

Broward County

Coral Springs - 3rd Wednesday of every month

6:30 - 8:00 pm

Facilitator - Sharmane Hines

 

Hollywood - 2nd Wednesday of every month

7:00 - 8:30 pm

Facilitator - Damian Velez

 

Miami/Dade County

Kendall - 1st Monday of every month (bilingual)

7:30 - 9:30 pm

Facilitators - Gabriela DeFrancisco, Gilbert Cartagena

 

Palm Beach County

Boca Raton - 4th Thursday of every month

6:30 - 8:00 pm

Facilitators - Kasha Deese, Donna Twitchell

 

Boynton Beach - 3rd Thursday of every month

6:30 - 8:00 pm

Facilitator - Sandra Prevost

 

West Palm Beach - 2nd Monday of every month

 6:30 - 8:00 pm

Facilitator - Fredda Steidle

 

Online Support Groups

1st Tuesday of every month

8:00 pm - 9:00 pm

 

Coffee Chat

every Friday 2:00 - 2:30 pm

 

Sign up to join the online support group, click here.

 

 

For more information about support groups, visit our online program and
event calendar
.

 

If you are interested in bringing a support group to your area, please contact, Fredda Steidle at (561) 279-8606 or email info@lupusfl.org.

 

LUPUS TALK FLORIDA
An Online Support Group and Message Board
Chat
We are pleased to announce Lupus Talk Florida, an online support group and message board for those living with and affected by lupus. This online support group features a message board, scheduled chat times specified by topic as well as being available for anytime someone would like to talk with someone who understands and may also need support. 
 

Please see the scheduled time below:

 

Lupus Online Support Group 

1st Tuesday of every month at 7pm next chat: 

April 3, 2012  

 

Coffee Chat:

Every Friday 2:00-2:30 pm

   

Message boards and scheduled chats are moderated by individuals living with lupus. We will be adding more topic specific chats soon. If you would like to see a specific topic, please feel free to send an email to info@lupusfl.org.

 

Click here to sign up for Lupus Talk Florida!

 

Spotlight on Clinical Research Studies:
EMBODY and ILLUMINATE STUDIES
Embody Logo 
Illuminate

 

 There are currently 2 new clinical research studies seeking local participants.  LFA is working to discover more effective and tolerable treatments for lupus through its Center for Clinical Trials Education and Lupus Research Registry to distribute information about clinical research studies currently seeking volunteers.   


Both the ILLUMINATE research studies and the EMBODY
research studies will help researchers learn more about investigational study drugs being developed for the treatment of systemic lupus erythematosus.  

Find more information about EMBODY and ILLUMINATE studies here
SOCIAL BUTTERFLIES...A Lupus Meetup
updated social butterflies
Lupus Foundation of America Southeast Florida Chapter has introduced a new program this summer. Social Butterflies is a meetup for those living with and affected by lupus to come together, share and have fun in various locations throughout South Florida. The meetup locations will change. Whether it is meeting up for coffee, ice cream or happy hour, Social Butterflies provides and opportunity for people to meet share experiences and support each other in a social setting. 

 

We are looking for Social Butterflies meetup hosts! If you are interested in bringing a meetup to your area, please email info@lupusfl.org

 

For more information visit the Social Butterflies page.

 

 

Greetings!
  

 

 

March is National Kidney Awareness Month and we have seen much in the news this month about how lupus affects the kidneys with Actor, Comedian and Musician Nick Cannon's announcement that he was recently diagnosed with Lupus Nephritis.

 

Lupus nephritis most often develops within the first five years after the symptoms of lupus start, and usually affects people between the ages of 20 and 40. It is estimated that as many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require medical evaluation and treatment. Men with lupus are more likely to develop kidney disease and to have a worse prognosis.

 

We are putting in great effort and funding toward Lupus Nephritis research. It is one of several areas of research supported by our National Research Program. Most recently, the Lupus Foundation of America funded studies on biomarkers to better diagnose and monitor lupus nephritis, as well as potential new treatments for this serious manifestation of lupus.

 

In this newsletter we will focus on the Kidneys and Lupus. You will meet Jen who recently had a kidney transplant because of her lupus. Her story will inspire you, as she has not let it stop her from helping others and bringing awareness to this disease. Our 15 Questions series will help you better understand how lupus affects the kidneys and we hope you will attend this month's free teleconference, Lupus and the Kidneys, that is sure to provide more insight.

 

Living with lupus can be as complicated as the disease itself.  There is a tremendous lack of awareness and there aren't nearly enough treatment options available. We have made great strides but there is much more work to be done. We promise you though until the day comes where there is a cure, that you aren't alone and we will continue to work tirelessly to change the future of lupus today. We couldn't do it without the efforts of every volunteer, every support group leader, every person who shares their story, every caregiver, every "lupus aware" healthcare provider, every walker, every donor...we couldn't do it without you!  If you would like to find out how you can make a difference, call us at 561-279-8606 or email us at info@lupusfl.org.

 

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." 

- Margaret Mead

 

  Sincerely,

Amy E. Kelly-Yalden
President and CEO, Lupus Foundation of America, SE Florida Chapter 

15 Questions Pic

 

Topic: Kidney Issues and Lupus
Brad Rovin, MD, Professor of Medicine and Pathology, College of Medicine and Director, Department of Nephrology 
Ohio State University
 
For Dr. Rovin's answers to your questions, 

 

The next topic is Clinical Trials. To submit your question or view an archive of past questions, please click here.
Lupus and the Kidneys Teleconference
  teleconference

Friday, March 23, 2012  

11:00 AM - 12:00 PM 
 Presenter: Michale Madaio, MD 

To register for this teleconference, click here
walk square  

 

In 2012, we will do it again reaching even more people affected by this disease and raising funds to help find a cure. 

 

2012 Walk Dates!

 

Broward Walk for Lupus Now 

May 19, 2012

Miami Walk for Lupus Now

September 15, 2012

Palm Beach Walk for Lupus Now

November 10, 2012

      

Interested in helping to make sure 2012 is another record breaking walk season? Become an ambassador! Help LFA make the walks bigger and better! In your are interested please email Janelle Cedeno at jcedeno@lupusfl.org 
 
Get your company and doctor on board! Encourage them to start a Corporate Champion or Practice Partner team. 

 

Registration is open. Create your team and or register today!

Announcing the 2012 Michael Jon Barlin Scholarship 
 
MJBarlin Headshot

The LFA Southeast Florida Chapter is proud to be able to offer the Michael Jon Barlin Scholarship Fund, an annual $5,000 scholarship to support the educational expenses of a South Florida resident living with lupus. The scholarship is in memory of Michael Jon Barlin, who died from complications of lupus at age twenty-four. He struggled with the debilitating effects of the disease for ten years, but during that time managed to obtain a BS degree with honors from the University of Miami. Michael touched many people during his short life and those close to him and his family have established this scholarship fund to assist college students bearing the extra burden of this disease.  

 
For more information and to apply for the 
Michael Jon Barlin Scholarship, click here

All applications must be received by May 31, 2012
2012 CLOSET COUTURE LUNCHEON
April 10, 2012
Closet Couture Flyer 2012   

This second annual event will be an afternoon of food, friends and silent auction filled with fabulous handbags, accessories, furniture and much more!

 

Can't attend the luncheon but want to help?

We are also accepting donations of gently used designer handbags, jewelry and accessories for the silent auction. So if you are getting ready to do some spring cleaning, help the Lupus Foundation of America Southeast Florida Chapter and donate! All donations are greatly appreciated and will help to make this event true success, raising much needed funds for those living with lupus in Florida.

 

If you would like to make a donation, items may be dropped off to the Lupus office at:
75 NE 6th Avenue
Suite 110
Delray Beach, Florida 33483

You can also contact us at (561) 279-8606.

Purchase tickets here!

LUPUS VOICES ACROSS AMERICA

Voices Map 

 

 If you are living with lupus or loving someone with lupus, share your voice, help us raise awareness and read the stories of others affected by lupus by visiting www.lupusvoices.org.  Lupus Voices Across America was designed by our chapter and national as a national community for people with lupus and their supporters to tell their stories and give a voice to their experiences. Together, these stories express the complexity and uniqueness of the disease from person to person. We also urge you to use this as a tool to empower yourself and others to raise awareness of lupus. Lupus doesn't only affect the person living with disease. By sharing your story we expand our reach within the lupus community and beyond to help others understand what the disease is, how it affects people, and what it's like to live with lupus. 

  

 

LUPUS VOICES SPOTLIGHT:

Johanna C, diagnosed at 22 

Johanna C

What do you want others to know about lupus?
I Want people to know it disrupts your life. I cant work and had to stop working in 2008. I worked on that job for 22 years. I was hurting, going to work in pain, and to try to get up hour early to get going with my aching body. I attend support group meetings, so it helps to talk about lupus with someone who is going through it.
 
How has lupus impacted your life?
Lupus has impacted my life in so many ways. I have SLE and just got approved for disability in January 2011 but now I have to wait to get the medical part completed. I've been in and out of hospital, with kidney and heart problems. Imagine going through this with no insurance?People who have good health are blessed should not take it for granted. The drugs I take to keep pain away are actually drugs for arthritis and very hard on my body Through it all Im still blessed. Never take what you can and love to do for granted. 
 
Thanks Johanna 

 

Add your Voice today at www.lupusvoices.org

 

EVERY DOLLAR COUNTS.
 
Please consider making a
donation today 
to help us find a cure for lupus!
 
 Lasting Tributes
 
HAVE YOU CREATED YOUR TRIBUTE PAGE? 
SHARE YOUR STORY, RAISE AWARENESS AND FUNDS OR HONOR OR MEMORIALIZE A LOVED ONE. 

 


Federal employees, postal workers, and military personnel and retirees can contribute to the LFA through the Combined Federal Campaign (CFC). Designate your CFC contributions to the LFA (CFC Agency #80978) to continue our work to improve the quality of life for people living with lupus and search for the next breakthrough.

  

 

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About LFA

The Lupus Foundation of America, Inc. (LFA) is the foremost 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. The Southeast Florida Chapter provides information, educational programs, support groups and personalized help to the over 100,000 people living with lupus in Florida and their loved ones.  The Chapter also supports research and promotes awareness through education and advocacy on the state and local level. 


Lupus Foundation of America, SE FL Chapter
75 NE 6th Avenue, Suite 110

Delray Beach, FL 33483

LFA Helpline: (561) 463-CURE (2873)

For Business Inquiries: (561) 279-8606 

Email info@lupusfl.org