President Bush has signed into law legislation passed by Congress that funds the federal government for the 2008 fiscal year. The appropriations spending package contains several provisions that will boost funding for important lupus research and education initiatives advocated by the Lupus Foundation of America (LFA).
Thanks to all of the hard work of our advocates, the package includes $3.122 million which enables the Centers for Disease Control and Prevention (CDC) to continue and expand the National Lupus Patient Registry as part of a broader national epidemiological study on lupus. This amount represents a $2.12 million increase over the amount provided by Congress last year. An increase of this amount is an incredible accomplishment given the cuts in the federal budget.
The increased funding would ensure that the study includes all forms of lupus and all affected populations, particularly African Americans, Hispanics/Latinos, Asian Americans, and Native Americans who are disproportionately at-risk for lupus. The Lupus Foundation of America will work with the CDC to determine other areas of the United States that would be ideal sites to study these populations.
Expansion of the number of sites is important to determine the true national incidence and prevalence of lupus. Previous attempts at population-based epidemiological studies have been incomplete. Studies conducted in the mid-1980s failed to include Hispanics/Latinos and Asian Americans. Equally important, many earlier attempts at lupus epidemiology failed to focus on all forms of the disease. Specifically, cutaneous lupus, drug-induced lupus and neo-natal lupus were omitted.
The pharmaceutical and biotechnology industries need this important information to make decisions about investing in lupus research to develop new, safe and effective therapies. Also, without this information, it is virtually impossible to accurately measure the true social and economic burden of this disease.
The appropriations package also provides funding for the Office of Women’s Health to develop and implement a sustained lupus awareness and education campaign aimed at reaching health care professionals and the general public with an emphasis on reaching women at greatest risk for developing lupus. This effort will help to improve the early diagnosis and treatment of lupus, one of the LFA’s highest priorities.
The Lupus Foundation of America is very grateful for the hard work of our advocates and Members of Congress for this significant accomplishment! We will keep our constituents informed of developments in the ensuing months.
December 31, 2007
December 21, 2007
Happy Holidays from the Lupus Foundation of America
Seasons greetings everyone, and a good morning to you.
As 2007 winds down and people gear up for the holidays, I wanted to take this opportunity to thank everyone who has become part of our On the Road to a Cure family. Like the "Little Engine that Could," the LFA's blog is slowly but surely building an audience, while reaching out to people who are affected by lupus.
It has been my pleasure to meet some of the lupus bloggers who are out there. So on that note, I do want to give a special holiday shout out to a few of the amazing people I have come across, because of this blog: Nancy in Alabama, Milet in the Philippines, Chronic Chick, Emmyrose, Loretta at Life Beyond Lupus, James and Dylan at Across the LupUS, and Brian in Michigan.
As always, if you're aware of other lupus bloggers out there, please share this blog with them, and /or have them get in touch with me at davis@lupus.org.
On behalf of the Lupus Foundation of America, I wish you all happy holidays, and a healthy 2008!
I am on my way to Florida this afternoon to spend the holidays with family, so ... until January 2008,
Wick
As 2007 winds down and people gear up for the holidays, I wanted to take this opportunity to thank everyone who has become part of our On the Road to a Cure family. Like the "Little Engine that Could," the LFA's blog is slowly but surely building an audience, while reaching out to people who are affected by lupus.
It has been my pleasure to meet some of the lupus bloggers who are out there. So on that note, I do want to give a special holiday shout out to a few of the amazing people I have come across, because of this blog: Nancy in Alabama, Milet in the Philippines, Chronic Chick, Emmyrose, Loretta at Life Beyond Lupus, James and Dylan at Across the LupUS, and Brian in Michigan.
As always, if you're aware of other lupus bloggers out there, please share this blog with them, and /or have them get in touch with me at davis@lupus.org.
On behalf of the Lupus Foundation of America, I wish you all happy holidays, and a healthy 2008!
I am on my way to Florida this afternoon to spend the holidays with family, so ... until January 2008,
Wick
December 19, 2007
This Holiday Season ... Give a Gift of Hope to the Lupus Foundation of America
During this holiday season, you can give the Gift of Hope to millions Americans who are affected by lupus through a year-end contribution to the Lupus Foundation of America. Any gift that you make today to our 2007 Year-end Giving Campaign will lead to a better tomorrow in the fight against lupus.
Through your generous contribution, the LFA will be able to provide hope and support to almost 2 million people -- women, men and children and their families -- who live with this life-diminishing, life-threatening disease.
From all of us at the LFA, we extend best wishes to you and your family for the happiest of holidays and a joyous New Year!
Through your generous contribution, the LFA will be able to provide hope and support to almost 2 million people -- women, men and children and their families -- who live with this life-diminishing, life-threatening disease.
From all of us at the LFA, we extend best wishes to you and your family for the happiest of holidays and a joyous New Year!
December 17, 2007
Lupus: Time To Do Something About It
Good morning everyone:
Hope you had a good weekend. Mine was nice. I finished all my shopping, as I prepare to head to Orlando for the holidays. Caught up on some movies. Finally saw 1965's A Patch of Blue (Sidney Poitier and Shelley Winters). It was outstanding! And I saw 1963's The Haunting (Julie Harris). Don't bother with that one.
Let's now turn from movies in the theater, to public service announcements (PSAs).
I received a lot of good feedback on the PSA I posted a few entries below. So I wanted to share another one with you. This one is a few years older, and is called Lupus: Time To Do Something About It. And it's narrated by Tomiko Fraser Hines, Maybelline model and national spokesperson for the Lupus Foundation of America. Lupus is personal for Tomiko, as her sister Shneequa was diagnosed with lupus several years ago.
Take a look.
Until next time, Wick
Hope you had a good weekend. Mine was nice. I finished all my shopping, as I prepare to head to Orlando for the holidays. Caught up on some movies. Finally saw 1965's A Patch of Blue (Sidney Poitier and Shelley Winters). It was outstanding! And I saw 1963's The Haunting (Julie Harris). Don't bother with that one.
Let's now turn from movies in the theater, to public service announcements (PSAs).
I received a lot of good feedback on the PSA I posted a few entries below. So I wanted to share another one with you. This one is a few years older, and is called Lupus: Time To Do Something About It. And it's narrated by Tomiko Fraser Hines, Maybelline model and national spokesperson for the Lupus Foundation of America. Lupus is personal for Tomiko, as her sister Shneequa was diagnosed with lupus several years ago.
Take a look.
Until next time, Wick
December 14, 2007
Carol's Daughter Joins Forces with the Lupus Foundation of America to Shine a Spotlight on Lupus
Carol’s Daughter, a company specializing in skin care, has announced a partnership with the Lupus Foundation of America (LFA). Because there are an estimated 1.5 million Americans with lupus, Carol’s Daughter and the LFA are committed to improving the diagnosis and treatment of lupus, and helping individuals and families affected by the disease. With a mission to increase public awareness, Carol’s Daughter and Sephora will host a series of educational/promotional events nationwide.
Lupus has affected both the mother -- Carol -- of the company founder, Lisa Price, as well as Karen Evans, Carol's Daughter spokes-beauty ... and Jada Pinkett Smith’s aunt.
Carol’s Daughter will donate a portion of its sales proceeds from each purchase of Candy Paint lip gloss to the LFA. Candy Paint lip gloss -- available in 12 sumptuous shades with names like Park Avenue Bling and Purple Reign -- contains shea butter and aloe vera to protect and heal, while the grape seed oil, rich in antioxidants and vitamins, soothes and regenerates the lips. Formulated with a hint of peppermint flavor and loaded with all natural ingredients, Candy Paint is “where color meets therapy.”
Candy Paint is available at all Carol’s Daughter stores, http://www.carolsdaughter.com/products.asp?dept=1046, select Sephora and Macy’s locations, http://www.sephora.com/ or by calling 877-540-2101.
So look great ... and help support the mission of the LFA.
Lupus has affected both the mother -- Carol -- of the company founder, Lisa Price, as well as Karen Evans, Carol's Daughter spokes-beauty ... and Jada Pinkett Smith’s aunt.
Carol’s Daughter will donate a portion of its sales proceeds from each purchase of Candy Paint lip gloss to the LFA. Candy Paint lip gloss -- available in 12 sumptuous shades with names like Park Avenue Bling and Purple Reign -- contains shea butter and aloe vera to protect and heal, while the grape seed oil, rich in antioxidants and vitamins, soothes and regenerates the lips. Formulated with a hint of peppermint flavor and loaded with all natural ingredients, Candy Paint is “where color meets therapy.”
Candy Paint is available at all Carol’s Daughter stores, http://www.carolsdaughter.com/products.asp?dept=1046, select Sephora and Macy’s locations, http://www.sephora.com/ or by calling 877-540-2101.
So look great ... and help support the mission of the LFA.
December 13, 2007
This is Lupus: A Public Service Announcement created by the Lupus Foundation of America
Good morning everyone ...
Wanted to share with you a video that was created for and shown at the Lupus Foundation of America's 4th Annual Awards Gala, held in Washington DC last May.
It's pretty powerful.
Until next time, Wick
Wanted to share with you a video that was created for and shown at the Lupus Foundation of America's 4th Annual Awards Gala, held in Washington DC last May.
It's pretty powerful.
Until next time, Wick
December 12, 2007
Donate Your Vehicle to the Lupus Foundation of America; Receive a Tax Deduction
Do you have a car, truck, boat or RV that you are thinking of selling or donating? We hope you will consider donating your vehicle to the Lupus Foundation of America. You may receive a tax deduction. As a charitable contribution, your vehicle donation could make a big difference.
LFA works with a reputable car donation program that will make all the arrangements to conveniently and quickly pick-up your car donation at no cost to you. They handle the title transfer requirements and will provide you with a tax deductible donation receipt when they pick-up your car.
The Lupus Foundation of America vehicle donation program is fast, easy and free. Use our online form to enter your vehicle information and a representative from Car Program LLC will contact you within four business days to discuss your donation.
Under new IRS regulations, your tax deduction is limited to an amount equal to the gross proceeds generated through the sale of your vehicle. An acknowledgement letter will be provided to you at the time of pick-up. Once your vehicle is sold, an additional receipt will be mailed to you by Car Program LLC if the gross proceeds are greater than $500.
Do you have questions? Then check out the Frequently Asked Questions here.
LFA works with a reputable car donation program that will make all the arrangements to conveniently and quickly pick-up your car donation at no cost to you. They handle the title transfer requirements and will provide you with a tax deductible donation receipt when they pick-up your car.
The Lupus Foundation of America vehicle donation program is fast, easy and free. Use our online form to enter your vehicle information and a representative from Car Program LLC will contact you within four business days to discuss your donation.
Under new IRS regulations, your tax deduction is limited to an amount equal to the gross proceeds generated through the sale of your vehicle. An acknowledgement letter will be provided to you at the time of pick-up. Once your vehicle is sold, an additional receipt will be mailed to you by Car Program LLC if the gross proceeds are greater than $500.
Do you have questions? Then check out the Frequently Asked Questions here.
December 11, 2007
Lupus Now Research Update enewsletter for December 2007 is now available
Hot off the press!
Lupus Now Research Update enewsletter for December 2007 is now available. http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=289&zoneid=76
To sign up for LFA's other free enewsletters, visit here http://donate.lupus.org/site/PageServer?pagename=registration
Lupus Now Research Update enewsletter for December 2007 is now available. http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=289&zoneid=76
To sign up for LFA's other free enewsletters, visit here http://donate.lupus.org/site/PageServer?pagename=registration
December 10, 2007
Teens & Lupus: This Week's Webchat at the Lupus Foundation of America
Morning all ... wanted to give you a quick reminder about the Lupus Foundation of America's December Webchat.
This Wednesday afternoon, December 12, at 3 p.m. Eastern Time, Dr. Peter Chira, an instructor of pediatric rheumatology at Stanford University School of Medicine at Lucille Packard Children's Hospital, will host a Webchat on Teens & Lupus.
Dr. Chira graduated from medical school from Albert Einstein College of Medicine and completed his pediatrics training at Children's National Medical Center in Washington, D.C. and Children's Hospital, Oakland, CA. He did his pediatric rheumatology fellowship at Stanford.
Dr. Chira's research interests focus on improving the transition and educational process for adolescents with rheumatic diseases, including those systemic lupus erythematosus, and evaluating the role of information technology in this transition, with a past project looking at the role of an online chat room support group for teens with rheumatic conditions.
Currently, Dr. Chira is working on a project looking at designing a personal health record for teens with chronic health problems.
You can submit a question in advance.
We hope you can join us for this Wednesday’s Webchat. It should be interesting.
Until next time, Wick
This Wednesday afternoon, December 12, at 3 p.m. Eastern Time, Dr. Peter Chira, an instructor of pediatric rheumatology at Stanford University School of Medicine at Lucille Packard Children's Hospital, will host a Webchat on Teens & Lupus.
Dr. Chira graduated from medical school from Albert Einstein College of Medicine and completed his pediatrics training at Children's National Medical Center in Washington, D.C. and Children's Hospital, Oakland, CA. He did his pediatric rheumatology fellowship at Stanford.
Dr. Chira's research interests focus on improving the transition and educational process for adolescents with rheumatic diseases, including those systemic lupus erythematosus, and evaluating the role of information technology in this transition, with a past project looking at the role of an online chat room support group for teens with rheumatic conditions.
Currently, Dr. Chira is working on a project looking at designing a personal health record for teens with chronic health problems.
You can submit a question in advance.
We hope you can join us for this Wednesday’s Webchat. It should be interesting.
Until next time, Wick
December 07, 2007
Give a Lupus Now Gift Subscription this Holiday Season!
This holiday season, you can give a gift that will keep on giving throughout the year. A gift subscription to Lupus Now® magazine is a perfect way to show how much you care about someone with lupus.
Published three times per year for people with lupus, their family members, and health care professionals, Lupus Now magazine includes 48 pages of the latest information on new treatments and therapies, clinical updates, lifestyle and wellness feature articles, personal stories and more.
You can order a gift subscription to Lupus Now through your local LFA chapter or by using our convenient online subscription order form.
Published three times per year for people with lupus, their family members, and health care professionals, Lupus Now magazine includes 48 pages of the latest information on new treatments and therapies, clinical updates, lifestyle and wellness feature articles, personal stories and more.
You can order a gift subscription to Lupus Now through your local LFA chapter or by using our convenient online subscription order form.
December 06, 2007
Lupus and State Legislation: Spotlight on Ohio
In addition to the Lupus REACH Amendments (S. 1359/H.R. 1192), which is federal legislation, many states are working toward helping people with lupus at the state level! This month's featured state is Ohio.
Ohio State Representative Sandra Williams (D-District 11) has introduced 127 HB 360 -- creating a Lupus Education and Awareness Program. You can view the bill at http://www.legislature.state.oh.us/bills.cfm?ID=127_HB_360.
The LFA has 4 chapters in Ohio that have worked closely with State Representative Williams. If you live in Ohio, please contact your State Representatives and ask them to support 127 HB 360.
Great work Ohio!
Ohio State Representative Sandra Williams (D-District 11) has introduced 127 HB 360 -- creating a Lupus Education and Awareness Program. You can view the bill at http://www.legislature.state.oh.us/bills.cfm?ID=127_HB_360.
The LFA has 4 chapters in Ohio that have worked closely with State Representative Williams. If you live in Ohio, please contact your State Representatives and ask them to support 127 HB 360.
Great work Ohio!
December 05, 2007
Save the Date -- March 10-11, 2008 -- for the Lupus Foundation of America's 2008 Advocacy Day
Join hundreds of lupus advocates from across the United States who will come together in Washington, DC for the annual LFA Advocacy Day. This is an opportunity for you to make your voice heard. Advocates will urge Congress to provide more funds for lupus research to find the causes and cure for lupus, and for education and public awareness programs to improve early diagnosis and treatment of the disease.
Registration for the 2008 LFA Advocacy Day is now open. Register here for the opportunity to make your voice heard on Capitol Hill.
Sign up to become a lupus e-Advocate to receive updates on how you can participate in Advocacy Day 2008.
Do you want to learn more about the advocacy efforts of the Lupus Foundation of America? Then visit the lupus.org/advocacy Website.
From all of us at the Lupus Foundation of America, we hope to see you on Capitol Hill in March 2008.
Registration for the 2008 LFA Advocacy Day is now open. Register here for the opportunity to make your voice heard on Capitol Hill.
Sign up to become a lupus e-Advocate to receive updates on how you can participate in Advocacy Day 2008.
Do you want to learn more about the advocacy efforts of the Lupus Foundation of America? Then visit the lupus.org/advocacy Website.
From all of us at the Lupus Foundation of America, we hope to see you on Capitol Hill in March 2008.
December 03, 2007
Give a Gift of Hope to the Lupus Foundation of America this Holiday Season!
During this holiday season, you can give the Gift of Hope to millions Americans who are affected by lupus through a year-end contribution to the Lupus Foundation of America. Any gift that you make today to our 2007 Year-end Giving Campaign will lead to a better tomorrow in the fight against lupus.
Through your generous contribution, the LFA will be able to provide hope and support to almost 2 million people -- women, men and children and their families -- who live with this life-diminishing, life-threatening disease.
From all of us at the LFA, we extend best wishes to you and your family for the happiest of holidays and a joyous New Year!
Through your generous contribution, the LFA will be able to provide hope and support to almost 2 million people -- women, men and children and their families -- who live with this life-diminishing, life-threatening disease.
From all of us at the LFA, we extend best wishes to you and your family for the happiest of holidays and a joyous New Year!
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