So part of my job is to see what other lupus organizations are doing in terms of education and awareness of this disease. I recently came across this in Facebook and wanted to share with you, as it's a pretty cool idea.
The Lupus Flare Foundation in Ontario, Canada is hosting its 3rd annual fund-raising event, 'Flare' for Fashion. Just what is 'Flare' for Fashion?
'Flare' for Fashion is an innovative and entertaining event that showcases the latest in fashion trends with famed fashion designers and fashion retail houses. The gala attracts celebrities along with Toronto's elite. Most importantly, it puts a face to a debilitating disease by sharing glimpses of heartfelt stories of people who live with lupus.
Simply put ... 'Flare' for Fashion is part contest, part fashion show and part public awareness campaign. Local fashion designers submit applications, which are then narrowed to a field of four contestants, by a judging panel. The final four contestants have photos and videos of their entries posted online, and the general public votes for their favorite design. The final 4 applicants are then invited to showcase their designs at 'Flare' for Fashion, where the winner is announced by David Dixon, a top fashion designer in Canada.
All monies raised from this event support the world-renowned University of Toronto Lupus Clinic. This facility provides not only ground-breaking research but also the best possible care and support for lupus patients and their families.
What a really interesting and fun way to raise money and awareness! We certainly wish them all the best for a successful event!
Until next time, Wick
August 28, 2007
August 27, 2007
Minority Women’s Health Summit 2007
This past weekend the Department of Health and Human Services’ Office on Women’s Health presented the 2007 Minority Women’s Health Summit in Washington, DC. The theme was "Women of Color: Addressing Disparities, Affirming Resilience, and Developing Strategies for Success."
The Lupus Foundation of America, Inc. was an active participant with this summit in several ways: Two members of our Medical-Scientific Advisory Council and a member of our national Board of Directors were speakers. Dr. Graciela Alarcon, from the University of Alabama at Birmingham, was a luncheon panelist. Dr. Robin Brey, from the University of Texas Southwest Medical Center in San Antonio, and National Board member Karen Evans were presenters during a workshop entitled, "Lupus: Strategies for Understanding the Barrier to Diagnosis in Minority Populations."
The LFA also was an exhibitor where we distributed copies of our publications, including Lupus Now magazine. And, last but not least, the LFA sponsored and designed the summit’s bags given to the approximately 500 participants.
Taking part in this summit was a really great opportunity for the LFA because of the higher incidence of lupus in minority women. After the luncheon panel and our workshop, there were many visitors to our booth who had never before known about lupus or how many people are affected. The LFA was able to educate health and federal workers from all over the country about lupus. To learn more about the Office on Women’s Health and this summit, please visit: http://www.4women.gov/mwhs/.
The Lupus Foundation of America, Inc. was an active participant with this summit in several ways: Two members of our Medical-Scientific Advisory Council and a member of our national Board of Directors were speakers. Dr. Graciela Alarcon, from the University of Alabama at Birmingham, was a luncheon panelist. Dr. Robin Brey, from the University of Texas Southwest Medical Center in San Antonio, and National Board member Karen Evans were presenters during a workshop entitled, "Lupus: Strategies for Understanding the Barrier to Diagnosis in Minority Populations."
The LFA also was an exhibitor where we distributed copies of our publications, including Lupus Now magazine. And, last but not least, the LFA sponsored and designed the summit’s bags given to the approximately 500 participants.
Taking part in this summit was a really great opportunity for the LFA because of the higher incidence of lupus in minority women. After the luncheon panel and our workshop, there were many visitors to our booth who had never before known about lupus or how many people are affected. The LFA was able to educate health and federal workers from all over the country about lupus. To learn more about the Office on Women’s Health and this summit, please visit: http://www.4women.gov/mwhs/.
August 24, 2007
FDA Proposes New Rule for Sunscreen Products
Have you looked at your sunscreen lately? Do you think your SPF (sunscreen protection factor) is an indicator of the level of protection you’re receiving from the sun's rays? It may not be.
The U.S. Food and Drug Administration (FDA) has proposed revisions to the rules used to rate SPFs. The new rules will require sunscreen manufacturers to factor in the level of protection from both UVA rays, as well as UVB rays. The current system only considers protection against UVB. UVB rays are those that cause sunburn, while UVA rays are those that lead to “suntan.”
What does the FDA hope to gain from this move? That the general public understands their skin protection involves more than just sunscreen. In fact, skin protection involves taking several precautions -- sunscreen, wearing protective clothing and limiting your time in the sun.
These changes would also lead to a broader spectrum of SPFs. Currently only products up to SPF 30 are recognized by the FDA. Under the new rules, products would range from SPF 2 to SPF 50+.
You can follow this process on the FDA's website.
And remember, to keep your skin safe ... wear sunscreen, protective clothing and limit your time in the sun!
The U.S. Food and Drug Administration (FDA) has proposed revisions to the rules used to rate SPFs. The new rules will require sunscreen manufacturers to factor in the level of protection from both UVA rays, as well as UVB rays. The current system only considers protection against UVB. UVB rays are those that cause sunburn, while UVA rays are those that lead to “suntan.”
What does the FDA hope to gain from this move? That the general public understands their skin protection involves more than just sunscreen. In fact, skin protection involves taking several precautions -- sunscreen, wearing protective clothing and limiting your time in the sun.
"Many consumers incorrectly believe the only way to protect themselves from skin damage caused by the sun is to apply sunscreens," said Douglas Throckmorton, M.D., deputy director of FDA's Center for Drug Evaluation and Research. "The labeling being proposed today strengthens the existing labeling for sunscreens by educating consumers on the added importance of limiting their time in the sun and wearing protective clothing as part of a sun protection regimen."
These changes would also lead to a broader spectrum of SPFs. Currently only products up to SPF 30 are recognized by the FDA. Under the new rules, products would range from SPF 2 to SPF 50+.
You can follow this process on the FDA's website.
And remember, to keep your skin safe ... wear sunscreen, protective clothing and limit your time in the sun!
August 23, 2007
Have You Asked a Lupus Expert?
Hello, my name is Dawn Isherwood and I am the Nurse Health Educator for the Lupus Foundation of America (LFA). Have you seen the Ask the Experts section of the lupus.org Website? In this section, you can submit questions to our panel of nationally-renowned lupus medical experts. We get a wide range of questions, from diagnoses to treatment options ... to how lupus affects the body to pregnancy ... to issues that are specific to men, women and children who are living with lupus. We also encourage family members of those living with lupus to submit questions.
While our panelists cannot respond to every question submitted, we do try to answer as many questions as possible. Typically, we select questions that may be of interest to a broad cross-section of people. These questions and answers are posted in the appropriate area on our archive. Questions of a highly personal nature will be answered individually, and will not appear on the LFA Website.
The Ask the Expert section receives several questions a day and the LFA attempts to answer questions as quickly as possible. Some questions may take longer to answer, as the experts who have been chosen to respond to the inquiry may not be readily available. So hang in there.
And remember, keep your questions coming!
While our panelists cannot respond to every question submitted, we do try to answer as many questions as possible. Typically, we select questions that may be of interest to a broad cross-section of people. These questions and answers are posted in the appropriate area on our archive. Questions of a highly personal nature will be answered individually, and will not appear on the LFA Website.
The Ask the Expert section receives several questions a day and the LFA attempts to answer questions as quickly as possible. Some questions may take longer to answer, as the experts who have been chosen to respond to the inquiry may not be readily available. So hang in there.
And remember, keep your questions coming!
August 20, 2007
August is here ... Attend a Town Hall Meeting
Hi, my name is Sara Chang, and I’m the grassroots advocacy coordinator for the Lupus Foundation of America.
August is about halfway done. Most Members of Congress left Capitol Hill and are spending this month in their home state or district. Now is the perfect time to find out if your Member of Congress is holding Town Hall meetings, or conducting office hours in your area.
Are you familiar with what a Town Hall meeting is? It is a meeting where you can express your opinions, and hear the responses from elected officials. A Town Hall meeting gives people who cannot come to Washington, DC a chance to feel that their voices are being heard. Everyone in your community can attend a Town Hall meeting.
Take the opportunity to personally talk to your Senators or Representatives about legislation and issues that are important to people with lupus. To find out if your Senators or Representatives are holding Town Hall meetings, you can check your local paper or call their district office. To find the district office for your elected officials, please visit our LFA Action Center.
Make your voice heard!
August is about halfway done. Most Members of Congress left Capitol Hill and are spending this month in their home state or district. Now is the perfect time to find out if your Member of Congress is holding Town Hall meetings, or conducting office hours in your area.
Are you familiar with what a Town Hall meeting is? It is a meeting where you can express your opinions, and hear the responses from elected officials. A Town Hall meeting gives people who cannot come to Washington, DC a chance to feel that their voices are being heard. Everyone in your community can attend a Town Hall meeting.
Take the opportunity to personally talk to your Senators or Representatives about legislation and issues that are important to people with lupus. To find out if your Senators or Representatives are holding Town Hall meetings, you can check your local paper or call their district office. To find the district office for your elected officials, please visit our LFA Action Center.
Make your voice heard!
August 15, 2007
LFA Observes its 30th Anniversary
Approximately 120 LFA volunteers and staff met in Chicago recently to observe the Lupus Foundation of America’s 30th anniversary. They also participated in the Annual Meeting of the LFA National Council, which is made up of representatives from all of the LFA’s 39 chapters. It was a fitting location, since Chicago was the city which hosted the first annual meeting when the LFA was officially incorporated back in 1977.
Volunteers participated in several days of training and planning to help their chapters provide support and services to all people affected by lupus. In addition, the LFA handed out individual and chapter awards for outstanding performance or to recognize individuals for their many years of service to the cause.
During one of the sessions, members of the LFA Medical-Scientific Advisory Council, as well as several LFA-funded lupus researchers, provided an update on recent advances in lupus research and treatment.
As the conference came to a close, meeting organizers donned “camp counselor” t-shirts and created an imaginary “Camp Lupus-Among-Us,” which featured a closing campfire ceremony that provided everyone with ways to share the lessons they learned during the four-day meeting.
Everyone who participated agreed that it was a rejuvenating and uplifting experience which gave them renewed energy as they returned home to plan for a new season of chapter activities and services.
Happy 30th Anniversary, LFA!
Volunteers participated in several days of training and planning to help their chapters provide support and services to all people affected by lupus. In addition, the LFA handed out individual and chapter awards for outstanding performance or to recognize individuals for their many years of service to the cause.
During one of the sessions, members of the LFA Medical-Scientific Advisory Council, as well as several LFA-funded lupus researchers, provided an update on recent advances in lupus research and treatment.
As the conference came to a close, meeting organizers donned “camp counselor” t-shirts and created an imaginary “Camp Lupus-Among-Us,” which featured a closing campfire ceremony that provided everyone with ways to share the lessons they learned during the four-day meeting.
Everyone who participated agreed that it was a rejuvenating and uplifting experience which gave them renewed energy as they returned home to plan for a new season of chapter activities and services.
Happy 30th Anniversary, LFA!
August 13, 2007
New CFC Code Reminder
CFC kicks off a few weeks from now!
Just wanted to remind federal employees how they can donate to the Lupus Foundation of America, Inc. through the Combined Federal Campaign:
Designate the Lupus Foundation of America, Inc. (LFA) on your CFC pledge card. Just beware, this year the LFA is sporting a new agency code: #10566.
Just wanted to remind federal employees how they can donate to the Lupus Foundation of America, Inc. through the Combined Federal Campaign:
Designate the Lupus Foundation of America, Inc. (LFA) on your CFC pledge card. Just beware, this year the LFA is sporting a new agency code: #10566.
The LFA is listed in the Combined Health Charities federation for National Voluntary Health Agencies. Your contribution will be used to support LFA research, education, and support programs. You can learn how your donations are used here.
On behalf of the 1.5 million Americans with lupus, we extend our sincere appreciation and gratitude for you generous and loyal support.
Have a great day!August 10, 2007
LFA Announces 2007 Gina Finzi Memorial Student Summer Fellowship Recipients
Each summer, the Lupus Foundation of America (LFA) announces the recipients of the Gina Finzi Memorial Student Summer Fellowship.
This year, the summer fellowships were granted to 5 students as part of the LFA’s ongoing efforts to stimulate increased research on lupus. These 5 researchers will conduct their studies under the supervision of an established lupus investigator.
Here are the five 2007 award recipients and their studies:
James Y. Chen
University of California, Los Angeles; David Geffen School of Medicine; Department of Medicine, Division of Rheumatology
“Investigating the Immuno-modulatory Defect of Mesenchymal Stem Cells in Lupus”
Gopal Chandrasekharan
University of Oklahoma; Health Sciences Center, Division of Pediatric Rheumatology
“The Role of TLR9-Signaling in Active Childhood Systemic Lupus Erythematosus”
Alexandra Cunningham
Emory University
“Barriers to Initial Diagnosis and Treatment Among Adult Female African-Americans with SLE in Atlanta”
Andrew Hwang
Brown University; Brigham and Women’s Hospital
“Evaluation of Internet Information for Persons with Early Symptoms of SLE”
Rajkumar Srikrishnan
University of California, San Diego; School of Medicine
“Autoantibody Microarray Surveys of SLE Families”
The fellowship program was established by former LFA President Dr. Sergio Finzi, in memory of his daughter Gina who passed away from lupus. The LFA fellowship program aims to foster interest in a career in lupus research by supporting basic, clinical and psychosocial research studies by young investigators.
Since 1984, the Gina Finzi Memorial Student Summer Fellowship program has supported the work of more than 190 young investigators.
Learn more about – and support – the LFA’s research efforts.
This year, the summer fellowships were granted to 5 students as part of the LFA’s ongoing efforts to stimulate increased research on lupus. These 5 researchers will conduct their studies under the supervision of an established lupus investigator.
Here are the five 2007 award recipients and their studies:
James Y. Chen
University of California, Los Angeles; David Geffen School of Medicine; Department of Medicine, Division of Rheumatology
“Investigating the Immuno-modulatory Defect of Mesenchymal Stem Cells in Lupus”
Gopal Chandrasekharan
University of Oklahoma; Health Sciences Center, Division of Pediatric Rheumatology
“The Role of TLR9-Signaling in Active Childhood Systemic Lupus Erythematosus”
Alexandra Cunningham
Emory University
“Barriers to Initial Diagnosis and Treatment Among Adult Female African-Americans with SLE in Atlanta”
Andrew Hwang
Brown University; Brigham and Women’s Hospital
“Evaluation of Internet Information for Persons with Early Symptoms of SLE”
Rajkumar Srikrishnan
University of California, San Diego; School of Medicine
“Autoantibody Microarray Surveys of SLE Families”
The fellowship program was established by former LFA President Dr. Sergio Finzi, in memory of his daughter Gina who passed away from lupus. The LFA fellowship program aims to foster interest in a career in lupus research by supporting basic, clinical and psychosocial research studies by young investigators.
Since 1984, the Gina Finzi Memorial Student Summer Fellowship program has supported the work of more than 190 young investigators.
Learn more about – and support – the LFA’s research efforts.
August 08, 2007
Camp Sunshine’s Annual Lupus Camp: August 19-24, 2007
I recently learned of a really great resource, and knew immediately it was blog-worthy. It’s called Camp Sunshine and it’s located in Maine.
So what is Camp Sunshine you ask? Camp Sunshine is a camp which supports children with life threatening illnesses and their families. The camp has the distinction of being the only program in the nation whose mission is to address the impact of a life threatening illness on every member of the immediate family -- the ill child, the parents, and the siblings.
Families with a child diagnosed with a life-threatening disease -- including cancer, kidney disease, lupus, leukemia and a brain tumor -- can attend one of the week-long camps.
And the best part is ... it’s free!
This year, Camp Sunshine will host its lupus camp August 19-24. As of this writing, there are a handful of slots still available. To learn more, visit the Camp Sunshine website: http://www.campsunshine.org/
Until next time ... Wick
So what is Camp Sunshine you ask? Camp Sunshine is a camp which supports children with life threatening illnesses and their families. The camp has the distinction of being the only program in the nation whose mission is to address the impact of a life threatening illness on every member of the immediate family -- the ill child, the parents, and the siblings.
Families with a child diagnosed with a life-threatening disease -- including cancer, kidney disease, lupus, leukemia and a brain tumor -- can attend one of the week-long camps.
And the best part is ... it’s free!
This year, Camp Sunshine will host its lupus camp August 19-24. As of this writing, there are a handful of slots still available. To learn more, visit the Camp Sunshine website: http://www.campsunshine.org/
Until next time ... Wick
August 07, 2007
Pregnancy & Lupus: Tomorrow's Webchat Focus
Morning all … Wick Davis back again, pulling blogging duty. You may recall I work on the LFA’s Website. Wanted to give you a quick reminder about this month’s Webchat.
Tomorrow afternoon, Wednesday, August 8, at 3 p.m. EDT, Dr. Rosalind Ramsey-Goldman, a Professor of Medicine at Northwestern University in Illinois, will host a Webchat on Pregnancy & Lupus. As you know, lupus affects women nine times more often than men, and most commonly manifests itself during the childbearing years. For that very reason, you’ll want to participate in this chat. It should be an interesting discussion.
You can log in to the chat here.
View our schedule of upcoming chats here.
Transcripts of all Webchats are posted online within 24 hours of the chat. You can view the transcript archive here.
As you might imagine, we do some marketing for these Webchats: via email, on lupus.org, thru Facebook and MySpace as well as thru some other avenues. What has been intriguing about this particular Webchat is the interest from the international community. So far, we've received advanced questions from Beirut, Lebanon; Cape Town, South Africa; Michoacan, Mexico; and San Juan, Puerto Rico. No idea if the topic has something to do with that, but it is very interesting.
In any event, we hope to see you at tomorrow's chat, or at a future one.
Tomorrow afternoon, Wednesday, August 8, at 3 p.m. EDT, Dr. Rosalind Ramsey-Goldman, a Professor of Medicine at Northwestern University in Illinois, will host a Webchat on Pregnancy & Lupus. As you know, lupus affects women nine times more often than men, and most commonly manifests itself during the childbearing years. For that very reason, you’ll want to participate in this chat. It should be an interesting discussion.
You can log in to the chat here.
View our schedule of upcoming chats here.
Transcripts of all Webchats are posted online within 24 hours of the chat. You can view the transcript archive here.
As you might imagine, we do some marketing for these Webchats: via email, on lupus.org, thru Facebook and MySpace as well as thru some other avenues. What has been intriguing about this particular Webchat is the interest from the international community. So far, we've received advanced questions from Beirut, Lebanon; Cape Town, South Africa; Michoacan, Mexico; and San Juan, Puerto Rico. No idea if the topic has something to do with that, but it is very interesting.
In any event, we hope to see you at tomorrow's chat, or at a future one.
August 01, 2007
Join Us at an LFA Patient Education Program
Hi. My name is Susan Drinan-Bowes and I work in the Education & Research Dept. of the LFA. I wanted to tell you about our patient education program called “Lupus Now: State-of-the-Art Approaches from the Experts.” It launched in April 2007 and has already gone to four cities.
Basically, this program is designed to educate people with lupus, and their families and caregivers, on the challenges of managing lupus.
The program includes cutting-edge information from scientific leaders in rheumatology, dermatology and nephrology on a variety of topics, including new lupus treatments, cutaneous (skin) lupus; lupus and kidneys; lupus and pregnancy; and lupus and clinical research. There’s even an opportunity for attendees to ask questions of the expert panel.
Two of the programs were conducted solely in Spanish and a webcast of the Spanish program will be available at http://www.lupus.org/ by the end of August. You can view a webcast in English here http://netscore.astutetech.com/lupus.
Maybe our program is coming to a town near you. Check out the schedule for the programs remaining in 2007:
- Denver, CO Saturday, August 25, 2007
- Las Vegas, NV Saturday, September 15, 2007
- New York, NY Saturday, September 29, 2007
- Boston, MA Saturday, November 10, 2007
If you’d like more information about this patient education program, contact me at the LFA at 202-349-1153 or bowes@lupus.org.
We’d love to see you at an upcoming event.
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