The Lupus Foundation of America continues to expand its presence on the Web. Below is a listing of new areas of outreach. Come join us in these locations.
CaringBridge
Now you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design.
eBay's Giving Works Program
Are you a frequent buyer / seller on eBay? Do you want to help raise money on behalf of lupus research while winning those auctions? Learn more here.
http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=11401
Facebook.com
You do need to have a Facebook account to view this page. It takes a few moments to create one. If you already have an account, come join the "Lupus Foundation of America, Inc." group.
http://www.facebook.com/group.php?gid=2300574157
MySpace.com
http://www.myspace.com/lupusfoundationofamerica
YouTube.com
The Lupus Foundation of America's public service announcements (PSAs) have been posted to YouTube. Take a look.
http://www.youtube.com/user/LupusFoundation
July 28, 2008
Lupus Foundation of America Updates: Message Boards & Walk for Lupus Now
Hey everyone ...
Hope you had a great weekend. Wanted to share a few things with you this morning.
LFA Message Boards Continue to Grow
As of this morning, there are more than 1560 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.
You may have noticed we have added 2 new categories -- "Welcome / Introductions" and "Lupus in the News." We've also tweaked a few others.
Couple of interesting things we've noticed. First, more teens are finding our boards. As are more people in the Armed Forces. And our international friends are finding us as well. Australia, the United Kingdom and Malaysia have been representin' for a while ... and we can now add Romania to the mix.
Welcome to everyone!
Walk for Lupus Now
LFA's Fall Walk season will begin in September. Money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Mark your calendars for the upcoming Walks.
Chicago, IL -- Saturday, September 6, 2008
Hobart, IN -- Saturday, September 13, 2008
Hope you had a great weekend. Wanted to share a few things with you this morning.
LFA Message Boards Continue to Grow
As of this morning, there are more than 1560 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.
You may have noticed we have added 2 new categories -- "Welcome / Introductions" and "Lupus in the News." We've also tweaked a few others.
Couple of interesting things we've noticed. First, more teens are finding our boards. As are more people in the Armed Forces. And our international friends are finding us as well. Australia, the United Kingdom and Malaysia have been representin' for a while ... and we can now add Romania to the mix.
Welcome to everyone!
Walk for Lupus Now
LFA's Fall Walk season will begin in September. Money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Mark your calendars for the upcoming Walks.Chicago, IL -- Saturday, September 6, 2008
Detroit, MI -- Saturday, September 6, 2008
Piqua, OH -- Saturday, September 6, 2008
Hobart, IN -- Saturday, September 13, 2008
Des Moines, IA -- Saturday, September, 13, 2008
Baltimore, MD -- Saturday, September 13, 2008
Nashville, TN -- Saturday, September 13, 2008
Baltimore, MD -- Saturday, September 13, 2008
Nashville, TN -- Saturday, September 13, 2008
July 25, 2008
Lupus Genetic Studies Seeks Volunteers
The Lupus Genetic Studies at the Oklahoma Medical Research Foundation (OMRF) continue to look for families of all ethnic backgrounds, in which one or more individuals has been diagnosed with systemic lupus.
Qualifying participants help by completing some study paperwork and donating a one time blood sample. Travel to Oklahoma City is not necessary and there is no cost to participate.
Additionally, OMRF is looking for individuals with no lupus or lupus in their families to participate for comparison studies.
To learn more, visit the OMRF website for more information.
Qualifying participants help by completing some study paperwork and donating a one time blood sample. Travel to Oklahoma City is not necessary and there is no cost to participate.
Additionally, OMRF is looking for individuals with no lupus or lupus in their families to participate for comparison studies.
To learn more, visit the OMRF website for more information.
July 23, 2008
Are You Interested in Participating in an SLE Quality of Life Study?
UPDATE: Thanks to your overwhelming response ... the researchers have already identified all the participants for this study -- in 1 day!
According to the researchers, the interviews have gone amazingly well and they learned so much from the callers that they are considering amending their IRB protocol to accept additional particpants.
We should know more in a few weeks. Stay tuned! And thanks to everyone who participated.
According to the researchers, the interviews have gone amazingly well and they learned so much from the callers that they are considering amending their IRB protocol to accept additional particpants.
We should know more in a few weeks. Stay tuned! And thanks to everyone who participated.
July 22, 2008
KGO-TV Story Highlights LFA-Supported Lupus Investigator
An LFA-supported lupus investigator from Stanford University was featured in a story broadcast on San Francisco’s ABC affiliate KGO-TV. Paul Utz, M.D., Associate Professor of Medicine, and his team have begun studying genetic markers, taken from blood samples, to learn more about the physiology of specific lupus patients.The story also features LPGA pro golfer and Stanford University women’s assistant golf team coach Salimah Mussani, who has lupus.
The story highlights the promising research underway to understand more about lupus and develop new, safe and effective treatments for the unpredictable and potentially fatal autoimmune disease. It has been more than 40 years since a new drug was approved by the U.S. Food and Drug Administration (FDA) specifically for lupus.
Watch the KGO story about lupus.
About Dr. Utz’s LFA Research Grant -- "Proteomic Studies in Systemic Lupus Erythematosus"
Lay Abstract:
Systemic lupus erythematosus (SLE) is an autoimmune inflammatory disease that can progressively damage multiple organs. The pathophysiology of SLE involves antibody formation against self-molecules, including those directed against RNA and DNA. By employing several mouse models of SLE, this proposal will test the hypothesis that the initiation and progression of autoantibody production and end organ disease in SLE requires interferon signaling through three different intracellular proteins called IFNAR-2, STAT-1, and IRF-9. The results can be rapidly translated to the clinic by identifying new targets for drug development, and by discovering novel biomarkers for SLE.
About Salimah Mussani
Read Salimah’s story in the Golf Canada magazine (PDF -- Documents denoted with PDF require free Adobe Acrobat software.)View her page on the Stanford University website
July 21, 2008
Lupus Foundation of America's UV Light & Lupus Chat Transcript Posted Online
Morning everyone ...
Just a few lupus-related items to share with you.
First, thanks to everyone who attended the UV Light & Lupus Webchat hosted by Dr. Victoria Werth last Thursday. It went very well. A copy of that chat transcript has now been posted online.
Second, today is the deadline for completing our reader survey for Lupus Now magazine. If you haven't already done so, please share your feedback with us. Take the survey here.
That's your lupus scoop for now.
Until next time, Wick
Just a few lupus-related items to share with you.
First, thanks to everyone who attended the UV Light & Lupus Webchat hosted by Dr. Victoria Werth last Thursday. It went very well. A copy of that chat transcript has now been posted online.
Second, today is the deadline for completing our reader survey for Lupus Now magazine. If you haven't already done so, please share your feedback with us. Take the survey here.
That's your lupus scoop for now.
Until next time, Wick
July 17, 2008
The Lupus Foundation of America Thanks You for Supporting H.R. 6331, the Medicare Improvements for Patients and Providers Act
The Lupus Foundation of America would like to thank you for all of your phone calls and letters to the President and Congress. President Bush vetoed H.R. 6331, the Medicare Improvements for Patients and Providers Act before noon on Tuesday, July 15th. However, thanks to all of your efforts, the House of Representatives and Senate voted later Tuesday afternoon to override the President’s veto. The House voted 383-41 and the Senate later voted 70-26. H.R. 6331 now becomes law!
This bill is important to people with lupus because it clarifies offlabel drug usage, protects special classes of prescription drugs, and provides coverage of the benzodiazepines and barbiturates which are currently excluded under Medicare Part D, along with other beneficiary protections.
Thank you again for all of your time and support for people who depend on the Medicare beneficiary protections guaranteed by this legislation!
This bill is important to people with lupus because it clarifies offlabel drug usage, protects special classes of prescription drugs, and provides coverage of the benzodiazepines and barbiturates which are currently excluded under Medicare Part D, along with other beneficiary protections.
Thank you again for all of your time and support for people who depend on the Medicare beneficiary protections guaranteed by this legislation!
July 16, 2008
Lupus Blog Spotlight: The Lupus Runner
I would like to share a lupus blog with you. It is called The Lupus Runner. It's written by a runner named Brian Thomas.
Brian knows a lot of people with lupus. His mother-in-law has lupus. He and his wife have colleagues with lupus. He's even had students and known fellow runners with lupus. So Brian decided to help. In September 2007, he ran the North Country Trail 50-mile ultra-marathon in Manistee, Michigan. Accepting donations on behalf of the Lupus Foundation of America, Brian raised $5,000.
This year, he is running the Haliburton 100 mile run to raise money for -- about public awareness about -- lupus. Brian will also join forces with other people who have been affected by lupus, and who want to make a difference. If you are in Michigan, and would like to help Brian or join him in the marathon, contact him at fundraising@thomaswallace.org.
Here's a little bit about Brian ... in his own words.
"I'm an instructor at Saginaw Valley State University located in University Center, Michigan. I teach Global Cultures and Statistics. My research involves food, agriculture, and inequality. I have a Ph.D. in Sociology from Michigan State University and a M.S. in Environmental Studies from the University of Oregon. I'm married to my wonderful wife, Holli, and frequently run with our energetic one-year-old son Elliott, and our border collie Casey."
If you have a few moments, swing by The Lupus Runner and say hi to Brian.
That's the lupus scoop from my end.
Until next time, Wick
Brian knows a lot of people with lupus. His mother-in-law has lupus. He and his wife have colleagues with lupus. He's even had students and known fellow runners with lupus. So Brian decided to help. In September 2007, he ran the North Country Trail 50-mile ultra-marathon in Manistee, Michigan. Accepting donations on behalf of the Lupus Foundation of America, Brian raised $5,000.
This year, he is running the Haliburton 100 mile run to raise money for -- about public awareness about -- lupus. Brian will also join forces with other people who have been affected by lupus, and who want to make a difference. If you are in Michigan, and would like to help Brian or join him in the marathon, contact him at fundraising@thomaswallace.org.
Here's a little bit about Brian ... in his own words.
"I'm an instructor at Saginaw Valley State University located in University Center, Michigan. I teach Global Cultures and Statistics. My research involves food, agriculture, and inequality. I have a Ph.D. in Sociology from Michigan State University and a M.S. in Environmental Studies from the University of Oregon. I'm married to my wonderful wife, Holli, and frequently run with our energetic one-year-old son Elliott, and our border collie Casey."
If you have a few moments, swing by The Lupus Runner and say hi to Brian.
That's the lupus scoop from my end.
Until next time, Wick
July 15, 2008
Congrats to Debbie DeCerbo, winner of a $500 donation to her Walk for Lupus Now fund-raising page, courtesy of Firstgiving
Debbie DeCerbo of New Jersey is the winner of Firstgiving’s “winjuly” promotion. As the winner, Debbie has received a $500 donation to her Walk for Lupus Now fund-raising page for the Lupus Foundation of America’s New Jersey Chapter. Congratulations, Debbie, and we wish you all the best at the Union, NJ Walk for Lupus Now event on October 18, 2008.
For those of you who are not familiar with it, Firstgiving is a simple and efficient way to raise money online for the charity of your choice. The Lupus Foundation of America has its own fund-raising center within Firstgiving.
For the rest of the summer, Firstgiving will be running donation promotions where your use of social media to promote your fund-raising page could win a free donation for your cause.
To learn more about this promotion, visit The Online Fundraising Blog.
For those of you who are not familiar with it, Firstgiving is a simple and efficient way to raise money online for the charity of your choice. The Lupus Foundation of America has its own fund-raising center within Firstgiving.
For the rest of the summer, Firstgiving will be running donation promotions where your use of social media to promote your fund-raising page could win a free donation for your cause.
To learn more about this promotion, visit The Online Fundraising Blog.
July 14, 2008
Join the Lupus Foundation of America's Webchat this Thursday, July 17. "UV Light & Lupus" will be hosted by Dr. Victoria Werth.
Reminder -- the Lupus Foundation of America's Webchat is this Thursday afternoon, July 17, at 3 p.m. Eastern Time.
The LFA welcomes Dr. Victoria Werth, who will serve as the guest expert for the UV Light & Lupus chat.
Dr. Werth is chief of the Division of Dermatology, at the Philadelphia Veterans Administration Hospital. She is also a Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine.
Dr. Werth received her medical degree from Johns Hopkins University in Baltimore and served her internship in medicine and a residency in internal medicine at Northwestern Memorial Hospital in Chicago. She was a resident and later a chief resident and research fellow in dermatology at New York University. Dr. Werth is a member of several prestigious professional and scientific societies, including the American Academy of Dermatology, the American College of Physicians, the American College of Rheumatology and the Dermatology Foundation. She is a Feature Editor for the Journal of Clinical Rheumatology and a member of the editorial board of the Journal of the American Academy of Dermatology. In addition, Dr. Werth is a reviewer for several esteemed publications, including the Journal of the American Medical Association, the Journal of Investigative Dermatology, Arthritis & Rheumatism, the Journal of Rheumatology, and the British Journal of Dermatology.
You can submit a question in advance here.
We hope you can join us Thursday afternoon. To do so, you can log in to the live chat here.
As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.
The LFA welcomes Dr. Victoria Werth, who will serve as the guest expert for the UV Light & Lupus chat.Dr. Werth is chief of the Division of Dermatology, at the Philadelphia Veterans Administration Hospital. She is also a Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine.
Dr. Werth received her medical degree from Johns Hopkins University in Baltimore and served her internship in medicine and a residency in internal medicine at Northwestern Memorial Hospital in Chicago. She was a resident and later a chief resident and research fellow in dermatology at New York University. Dr. Werth is a member of several prestigious professional and scientific societies, including the American Academy of Dermatology, the American College of Physicians, the American College of Rheumatology and the Dermatology Foundation. She is a Feature Editor for the Journal of Clinical Rheumatology and a member of the editorial board of the Journal of the American Academy of Dermatology. In addition, Dr. Werth is a reviewer for several esteemed publications, including the Journal of the American Medical Association, the Journal of Investigative Dermatology, Arthritis & Rheumatism, the Journal of Rheumatology, and the British Journal of Dermatology.
You can submit a question in advance here.
We hope you can join us Thursday afternoon. To do so, you can log in to the live chat here.
As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.
July 11, 2008
Action Alert: White House Says President Will Veto H.R. 6331
Representatives from the White House have said that President Bush will veto H.R. 6331, the Medicare Improvements for Patients and Providers Act. The next step is now to contact your Representatives and Senators to vote to override the President's veto of H.R. 6331. Learn more and take action today.
Why this bill is important to people with lupus:
Clarifies off-label drug usage
The only drugs that currently have an indication for lupus are corticosteroids including prednisone, prednisolone, methylprednisolone, hydrocortisone; hydroxychloroquine (Plaquenil®); and aspirin. All other medications prescribed for lupus are considered off-label. It is important that people with lupus continue to have access to medications that are not currently approved for lupus.
Protects special classes of prescription drugs
If enacted, the law would require health plans to cover under Medicare Part D most classes of drugs for chronic diseases like lupus.
Provides coverage of the benzodiazepines and barbiturates
These drugs are currently excluded under Part D. Coverage is important because some physicians may prescribe these drugs for people with lupus who also may have seizures.
We encourage you to take action today.
Why this bill is important to people with lupus:
Clarifies off-label drug usage
The only drugs that currently have an indication for lupus are corticosteroids including prednisone, prednisolone, methylprednisolone, hydrocortisone; hydroxychloroquine (Plaquenil®); and aspirin. All other medications prescribed for lupus are considered off-label. It is important that people with lupus continue to have access to medications that are not currently approved for lupus.
Protects special classes of prescription drugs
If enacted, the law would require health plans to cover under Medicare Part D most classes of drugs for chronic diseases like lupus.
Provides coverage of the benzodiazepines and barbiturates
These drugs are currently excluded under Part D. Coverage is important because some physicians may prescribe these drugs for people with lupus who also may have seizures.
We encourage you to take action today.
Lupus Blog Spotlight: MaReVeilleVie
Good morning everyone:
Hope you're as ready for the weekend as I am. My aunt and uncle are coming to town tonight and I'm looking forward to that. Have another quick movie review to share.
I saw The Diving Bell & The Butterfly. The movie is the true story of France's Elle magazine editor Jean-Dominique Bauby, who suffered a stroke that left him fully paralyzed with a rare condition: locked-in syndrome. He could only communicate by blinking his left eye. The movie is absolutely phenomenal. Check it out.
And now on to lupus news.
Lupus Blog Spotlight
I would like to share another lupus blog with you. It is called MaReVeilleVie. Here's a little bit about the blogger ... in her own words.
"I am a 34 year old wife of a dashingly fabulous Airman, mother of a handsome, smart young man, daughter of a stunningly beautiful and courageous mother, and sister of two gorgeous and inspiring younger sisters. I also have a dog named Zoe.
I was diagnosed with lupus in '95 and have been fighting its side effects with the help of the Lord.
I know there is good reason for me having this illness, because I know that God won't put more on us than we can bear. So I must find my purpose and pursue it so that it's not in vain.
I love to talk to different people and learn about different cultures, religions and backgrounds ... I have visited Mexico, and lived in Italy. I have learned some French, Italian and Spanish. I love to travel and see different places taking in sites, cultures, foods, and languages. I am AWAKENED because I have opened my eyes to the gifts given to me by God and I will spend my days growing spiritually and becoming closer to my Lord. My biggest wish is that I fulfill His destiny planned for me."
If you have a few moments, swing by MaReVeilleVie and say hi.
That's the lupus scoop from my end.
Until next time, Wick
Hope you're as ready for the weekend as I am. My aunt and uncle are coming to town tonight and I'm looking forward to that. Have another quick movie review to share.
I saw The Diving Bell & The Butterfly. The movie is the true story of France's Elle magazine editor Jean-Dominique Bauby, who suffered a stroke that left him fully paralyzed with a rare condition: locked-in syndrome. He could only communicate by blinking his left eye. The movie is absolutely phenomenal. Check it out.
And now on to lupus news.
Lupus Blog Spotlight
I would like to share another lupus blog with you. It is called MaReVeilleVie. Here's a little bit about the blogger ... in her own words.
"I am a 34 year old wife of a dashingly fabulous Airman, mother of a handsome, smart young man, daughter of a stunningly beautiful and courageous mother, and sister of two gorgeous and inspiring younger sisters. I also have a dog named Zoe.
I was diagnosed with lupus in '95 and have been fighting its side effects with the help of the Lord.
I know there is good reason for me having this illness, because I know that God won't put more on us than we can bear. So I must find my purpose and pursue it so that it's not in vain.
I love to talk to different people and learn about different cultures, religions and backgrounds ... I have visited Mexico, and lived in Italy. I have learned some French, Italian and Spanish. I love to travel and see different places taking in sites, cultures, foods, and languages. I am AWAKENED because I have opened my eyes to the gifts given to me by God and I will spend my days growing spiritually and becoming closer to my Lord. My biggest wish is that I fulfill His destiny planned for me."
If you have a few moments, swing by MaReVeilleVie and say hi.
That's the lupus scoop from my end.
Until next time, Wick
July 09, 2008
Seeking Volunteers -- Who Meet Specific Criteria -- For A Lupus Clinical Study
The LFA is working with a company who is conducting research to learn more from people who live with lupus. The goal is to learn how people with lupus cope with their medications, and the side effects of these medications. The conversations will last an hour by phone, and volunteers will be compensated for their time.
In particular they are looking to speak with people who:
If you’re interested in participating, please contact Nicole Nyack at the Lupus Foundation of America at nyack@lupus.org.
The deadline to respond is this Friday, July 11.
In particular they are looking to speak with people who:
- Have been diagnosed with lupus within the last 3 years
- Have been/had been on a biologic for at least 9 months
If you’re interested in participating, please contact Nicole Nyack at the Lupus Foundation of America at nyack@lupus.org.
The deadline to respond is this Friday, July 11.
July 08, 2008
Are You Feeling Creative? Then Submit Something to the Lupus Now magazine's "Creative Corner."
Good morning everyone.
Hope you had a happy and safe 4th of July. I was in Pittsburgh, visiting friends from college. Had a really fantastic time, except for the long drive home.
Have another quick movie review with you. I saw Damn Yankees (1958). It's a film adaptation of a Broadway musical about a Washington Senators fan who makes a pact with the Devil to help his baseball team win the league pennant. Starring Tab Hunter, Gwen Verdon, and Ray Walston, Damn Yankees was an entertaining -- though slightly dated -- movie. Check it out.
Are You Feeling Creative? Then Submit Something to the Lupus Now magazine's "Creative Corner."
Do you write poems or essays? Or do you draw cartoons? If so, and you're looking for a creative outlet in which to share your talents with other people who are living with lupus, then submit something to the "Creative Corner" section of Lupus Now magazine.
Take a look at what others have already submitted.
To submit something, please contact the editor of Lupus Now magazine, Jenny Allan. She can be reached at:
Lupus Foundation of America, Inc.
2000 L Street, NW, Suite 710
Washington, DC 20036
Phone: 800-558-0121
Fax: 202-349-1156
Allan@lupus.org
We hope to see you in our "Creative Corner" soon!
Hope you had a happy and safe 4th of July. I was in Pittsburgh, visiting friends from college. Had a really fantastic time, except for the long drive home.
Have another quick movie review with you. I saw Damn Yankees (1958). It's a film adaptation of a Broadway musical about a Washington Senators fan who makes a pact with the Devil to help his baseball team win the league pennant. Starring Tab Hunter, Gwen Verdon, and Ray Walston, Damn Yankees was an entertaining -- though slightly dated -- movie. Check it out.
Are You Feeling Creative? Then Submit Something to the Lupus Now magazine's "Creative Corner."
Do you write poems or essays? Or do you draw cartoons? If so, and you're looking for a creative outlet in which to share your talents with other people who are living with lupus, then submit something to the "Creative Corner" section of Lupus Now magazine.
Take a look at what others have already submitted.
To submit something, please contact the editor of Lupus Now magazine, Jenny Allan. She can be reached at:
Lupus Foundation of America, Inc.
2000 L Street, NW, Suite 710
Washington, DC 20036
Phone: 800-558-0121
Fax: 202-349-1156
Allan@lupus.org
We hope to see you in our "Creative Corner" soon!
July 02, 2008
Take the Lupus Now magazine's Reader Survey
It’s reader survey time again! We want to know what you like about Lupus Now, what you would change, what’s most important to you, and the topics you’d like to see covered in future issues.The survey will be posted online through July 21. Take the survey here http://www.lupus.org/magazinesurvey.
You’ll be able to read all about the results in the Fall issue, due out in early October.
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