Human Genome Sciences (HGS) has reported continuation data from a Phase II study of BENLYSTA™ (belimumab, formerly LymphoStat-B®) showing sustained improvement in patients with active systemic lupus after four years of treatment. The data was presented at the EULAR 2009 scientific meeting in Copenhagen, Denmark.
Early results from a 52-week Phase III study of BENLYSTA™ are expected to be announced in July and results from a 76-week study are scheduled to be released in November.
BENLYSTA™ is being co-developed and commercialized by HGS and GlaxoSmithKline (GSK).
The HGS website has the full release about this additional Phase II data.
June 29, 2009
June 26, 2009
In the Mix: Designing a Social Life around the Limits of Lupus
It’s always a challenge for people with lupus to keep up with more active friends and make concrete social plans. But don’t use it as an excuse for not maintaining old friendships or creating new ones. Instead, focus on helping the people in your life better understand your condition and its restrictions: Once you accept and make peace with your situation, it will be easier for you to explain it to others.Learn how you can to keep lupus from slowing your social life.
June 24, 2009
The Summer 2009 Issue of Lupus Now Magazine Has Arrived
We have a lot for you in the new Summer issue of Lupus Now magazine! In particular, the articles cover topics that were requested by our readers in past surveys.Understanding how lupus runs in families, and why, led to our cover story on the heredity of lupus. It will get you thinking about your own family history, and whether autoimmune diseases have a foothold in your family tree.
And if lupus has caused your path in life to skip outside the lines, or even turn a right angle, you’ll enjoy meeting four people whose lupus changed their lives for the better, in "Changing Direction."
"In the Mix" may help you redesign your social life by hearing from two people whose fatigue and other symptoms have changed the way they keep up with friends.
Ever feel like speaking out on an issue near and dear to your heart? LaShundra Rundles did just that, and gained international recognition for her communication skills -- and as an African American woman. Even more courageous is her ongoing battle with lupus.
The Centers for Disease Control and Prevention recently released new and updated guidelines on vaccinations, and we have summarized the recommendations in a special chart. A report on the exposure you get from artificial indoor UV light will be of great interest to those of you who are photosensitive, even indoors.
Also, starting with this issue, several regular columns have moved online, so look for "Ask the Experts," "Healthful Eating," and "Circle of Hope" at lupusnow.org.
Don't want to miss out on the action? Then subscribe to Lupus Now magazine.
June 22, 2009
Lupus Foundation of America Urges Department of Defense (DoD) to Expand Medical Research on Lupus
Foundation’s CEO Testifies Before Senate Defense Appropriations Subcommittee
Last Friday, Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America, appeared before the Senate Defense Appropriations Subcommittee to testify about lupus, the prototypical autoimmune disease that principally affects young women in their child-bearing years. Ms. Raymond also described the impact of the disease on men and young children and the disproportionate impact of the disease on African-Americans, Hispanics, Asian Americans and Pacific Islanders and American Indians. She pointed out that this health disparity remains unexplained. Of the 17 national institutions and organizations that testified at the hearing, the Lupus Foundation of America was one of only five major disease-specific health organizations to present testimony.
In her remarks, Ms. Raymond reported on the genes linked to lupus and how they are triggered by environmental, hormonal and stress factors which, in the American service men and women may be exacerbated by intense training, foreign deployment, exposure to chemical agents, battle and more. Raymond thanked the Committee for including lupus in the Congressionally-directed Peer Reviewed Medical Research Program and asked that the disease remain in the program.
During her appearance, she pointed out that lupus is a significant health issue of concern in the military and in the population at large. She said that the disease is largely undiagnosed and that there was an urgent and unmet need to validate biological markers that can detect lupus in the early stages of the disease. She asked the Committee to consider providing a special focus on research to validate lupus biomarkers which could lead to a screening test for lupus.
Since 2005, the Department of Defense (DoD) has provided more than $7.1 million in new funding to support important studies on lupus and lupus biomarkers through the Congressionally-directed Peer Reviewed Medical Research Program. Four of the six DoD grants awarded to date have specifically focused on lupus biomarkers studies.
Last Friday, Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America, appeared before the Senate Defense Appropriations Subcommittee to testify about lupus, the prototypical autoimmune disease that principally affects young women in their child-bearing years. Ms. Raymond also described the impact of the disease on men and young children and the disproportionate impact of the disease on African-Americans, Hispanics, Asian Americans and Pacific Islanders and American Indians. She pointed out that this health disparity remains unexplained. Of the 17 national institutions and organizations that testified at the hearing, the Lupus Foundation of America was one of only five major disease-specific health organizations to present testimony.
In her remarks, Ms. Raymond reported on the genes linked to lupus and how they are triggered by environmental, hormonal and stress factors which, in the American service men and women may be exacerbated by intense training, foreign deployment, exposure to chemical agents, battle and more. Raymond thanked the Committee for including lupus in the Congressionally-directed Peer Reviewed Medical Research Program and asked that the disease remain in the program.
During her appearance, she pointed out that lupus is a significant health issue of concern in the military and in the population at large. She said that the disease is largely undiagnosed and that there was an urgent and unmet need to validate biological markers that can detect lupus in the early stages of the disease. She asked the Committee to consider providing a special focus on research to validate lupus biomarkers which could lead to a screening test for lupus.
Since 2005, the Department of Defense (DoD) has provided more than $7.1 million in new funding to support important studies on lupus and lupus biomarkers through the Congressionally-directed Peer Reviewed Medical Research Program. Four of the six DoD grants awarded to date have specifically focused on lupus biomarkers studies.
June 18, 2009
Lupus Foundation of America Blog Celebrates Its Second Birthday
With more than 300 posts under its belt, LFA's blog "On the Road to a Cure" turns two this Saturday, June 20.When we decided to create our blog, we knew that we wanted to create a vehicle that provided a more engaging, conversational take on things happening for the LFA, and in the lupus community at large.
"On the Road to a Cure" has been fortunate to reach out to many of you – here in the states, and around the world – who are living with lupus. It’s been amazing! And as a result of that contact, our blog now boasts links to more than 80 lupus bloggers worldwide.
An unexpected benefit to having this blog is that it has allowed us to actively engage people living with lupus. For example, the blog has been great for recruiting interviewees for articles in upcoming issues of Lupus Now magazine.
Our relationship with other lupus bloggers allowed us to coordinate efforts in regards to LFA's 2009 Advocacy Day on Capitol Hill back in March. As a result of that coordination, and the passion of our bloggers, LFA was able to make the 11th Annual Advocacy Day the largest and most successful in history.
So ... a big thank you to everyone who reads our blog. Together, we share a journey to raise public awareness about lupus, and to one day find a cure for this disease.
All the best,
Wick
June 16, 2009
Check Out the Walk for Lupus Now Event This Coming Weekend in Minnesota
Here is the Walk for Lupus Now event taking place this weekend, June 20-21.- Minneapolis, Minnesota -- June 21, 2009
To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.
If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk.
June 15, 2009
Watch Dr. Bruce Richardson Discuss His Hypothesis As To Why Men Develop Lupus
Women develop lupus nine times more often than men. Research implicates hormones and having two X chromosomes as risk factors for women. However, little is known about why men develop lupus.
Dr. Bruce Richardson of the University of Michigan has received a Lupus Foundation of America national research grant to study lupus in men. In this video, Dr. Richardson describes his research project and his hypothesis regarding the role epigenetics plays in the development of lupus in males.
Dr. Bruce Richardson of the University of Michigan has received a Lupus Foundation of America national research grant to study lupus in men. In this video, Dr. Richardson describes his research project and his hypothesis regarding the role epigenetics plays in the development of lupus in males.
June 12, 2009
Findings of International Survey Highlight the Significant Impact of Lupus on Patients' Lives
Results from an international online survey, carried out by UCB in conjunction with Lupus Europe and the Lupus Foundation of America, the two principal advocacy groups that represent people with lupus, were presented on June 12 during the EULAR (European League Against Rheumatism) congress in Copenhagen, Denmark, at a symposium called "Lupus - Considering the Future."Professor David Isenberg (Professor of Rheumatology at University College Hospital London), the symposium chairman, commented "Lupus is unpredictable, for some people the effects are more benign but for others, as the survey shows, the disease can have a huge detrimental impact. For all patients, lupus specialists should work via a multi-disciplinary approach tailoring care to the individual needs of the patient." He continued "Because lupus is a complex disease affecting multiple body systems, the development of effective drugs with a favourable risk:benefit profile is a major challenge – the new biological treatments seem to offer hope but we must wait until the results of ongoing trials are known."
About the survey ...
- The survey shows that lupus significantly impacts career, physical well-being and everyday living
- 81% of respondents report a negative impact of lupus on their career, with more than 28% not employed due to the disease
- 92% of respondents report a negative impact on their physical well being
- Fatigue, arthritis and muscle pain reported as most common symptoms
June 09, 2009
Check Out the Walk for Lupus Now Events This Coming Weekend in Colorado and Wisconsin
The Spring 2009 Walk for Lupus Now season is beginning to wind down. As you know, monies raised from these events support lupus research, lupus education programs, and patient and family support services.Here is a listing of upcoming Walks, taking place this weekend, June 13-14.
- Denver, Colorado -- June 14, 2009
- Milwaukee, Wisconsin -- June 13, 2009
To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.
If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.
June 08, 2009
Can You Share "Your View" with Us?
We know summer is just around the corner, but we’re already working on the Fall issue of Lupus Now! So, just for a minute, close your eyes and think back -- or ahead -- to Halloween and Thanksgiving, Christmas and Kwanzaa and Hanukkah, winter vacations and New Year’s celebrations, and send us your answer to this "My View" question.
"What are your favorite autumn and winter family traditions?"
Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Favorite Family Traditions" in the subject line of your email. We'll print as many of the responses as we can.
"What are your favorite autumn and winter family traditions?"
Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Favorite Family Traditions" in the subject line of your email. We'll print as many of the responses as we can.
June 05, 2009
Global Experts Gather to Tackle the Urgent and Unmet Needs of People with Lupus
This week LFA convened 70 lupus thought leaders from around the world, representing academia, biotechnology and pharmaceutical industries, and government to address the urgent and unmet need for the development and approval of new, safe, effective, and tolerable medications for people with lupus.
Discussions lead to agreement on several key outcomes and next steps including an agreement that LFA lead a collaboration with industry representatives to share and mine data gathered from past studies to determine possible trends in drug development, and to use the collective lessons to better construct future studies of new lupus treatments.
LFA has already begun to work with various stakeholders to implement the recommended strategies outlined during the meeting. The goal is to advance the science and medicine of lupus and bring new hope to people with lupus.
Read the full alert which provides additional information about this important meeting.
Discussions lead to agreement on several key outcomes and next steps including an agreement that LFA lead a collaboration with industry representatives to share and mine data gathered from past studies to determine possible trends in drug development, and to use the collective lessons to better construct future studies of new lupus treatments.
LFA has already begun to work with various stakeholders to implement the recommended strategies outlined during the meeting. The goal is to advance the science and medicine of lupus and bring new hope to people with lupus.
Read the full alert which provides additional information about this important meeting.
June 04, 2009
LFA's "Men & Lupus" Webchat to be Held Wednesday, June 10 at 3 p.m. Eastern
Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, June 10, at 3 p.m. Eastern Time.The LFA welcomes Dr. Mary Anne Dooley, who will serve as the guest expert for the Men & Lupus webchat.
This is your opportunity to ask questions and learn from a lupus expert. Dr. Dooley is currently an Associate Professor Medicine in the Division of Rheumatology and Immunology at the University of North Carolina in Chapel Hill (UNC-CH), and the Director of the UNC Rheumatology Lupus Clinic.
You can submit a question in advance here.
We hope you can join us Wednesday 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. Follow this link to read the LFA's previous chat transcripts.
June 03, 2009
Check Out the Walk for Lupus Now Events This Coming Weekend in California and Florida
As you know, Walk for Lupus Now season is underway, and monies raised from these events support lupus research, lupus education programs, and patient and family support services.Here is a listing of upcoming Walks, taking place this weekend, June 6-7.
- Orange County, California -- June 6, 2009
- St. Petersburg, Florida -- June 6, 2009
To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.
If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.
Until next time.
June 01, 2009
Lupus Foundation of America Recognizes Men's Health Month
June is a popular month for men and for fathers. Father’s Day is June 21, which also signals the end of Men’s Health Week, June 15-21.So to recognize these and other events this month, the LFA created this special section of content especially for men. Because men develop lupus too.
Learn more at http://www.lupus.org/menshealth.
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