We are non-profit, mostly voluntary health organization dedicate to raising public awareness , educating and supporting those affected by lupus, finding a cure, educating health care professionals, and promoting, encouraging and providing funds for Lupus research.
We hope that everyone had a great week. We have been busy in the office. This week, we had volunteers from Key Bank come in to the Cleveland office and help us assemble packets and other lupus informational material. Our President and C.E.O, Suzanne Tierney also traveled to Lima, Ohio to inform and educate people about lupus. We have plenty of exciting events coming up this week, and hope you can join us! Here is a list:
Tuesday, May 28
Cleveland: Brecksville Support Group at 7:00 pm
Dayton: Kettering Support Group at 6:00 pm
Also, don’t forget about our upcoming walks and fundraisers:
Cleveland: 2013 Liberty Mutual Invitational
Columbus: Annual Walk to End Lupus Now
For more information, please visit our website
We hope to see you all there!
August 22, 2012 
Dr. Gary Gilkeson has been investigating adult stem cell therapy with a grant from the Lupus Foundation of America, to find a new treatment for people with lupus who do not respond to standard treatment. Dr. Gilkeson’s research revolves around mesenchymal stem cells, unique adult stem cells with immunesuppressive properties that make them attractive as an adoptive cell therapy for the treatment of lupus. Their use in early phase human clinical trials is promising.
Dr. Gilkeson, who is chair of the LFA’s Medical Scientific Advisory Council, is now submitting an Investigational New Drug (IND) application to the Food and Drug Administration (FDA). The FDA allows physicians to submit a research IND to propose studying an unapproved drug, or an approved product for a new indication or in a new patient population.
LFA has been a pioneer in advancing basic and clinical adult stem cell transplantation research in humans as a treatment for lupus. But there are some hurdles for funding this type of research, chiefly because of misunderstandings that arise from the controversy over fetal stem cells that are in no way related to most stem cell research that uses cells derived from adult individuals. The research can also be time-consuming and expensive, as Dr. Gilkeson points out.
In the following Q and A with the Lupus Foundation of America, Dr. Gilkeson explains his research on adult stem cells and what it means for people with lupus.
Can you explain what you are trying to achieve with your research on adult stem cells?
We are trying to find a new treatment for lupus patients that fail to respond to standard treatment. Mesenchymal stem cells can be derived from a variety of tissues. You can receive your own cells or cells from someone else. No intense pre-treatment is needed like is done with bone marrow transplants. In trials performed thus far in China and to a more limited extent in Europe, the cells are well-tolerated with no obvious significant side effects. Our collaborators in China have treated over 100 patients with lupus who were unresponsive to Cytoxan® and/or CellCept® with mesenchymal stem cells and reported a 70 percent response rate with decreased disease activity scores, decreased proteinuria (protein in the urine, which indicates kidney disease) and decreased use of other medications. The trial is uncontrolled (meaning everyone in the trial received the cells and there was no placebo group) so one cannot conclude that the treatment is definitively effective, but it does mean further trials done in a controlled fashion are needed.
How would the therapy work in a person with lupus?
The patient would receive an infusion of the cells like most any other infusion. The cells have the ability to suppress the immune system in the tissues where inflammation is occurring. They are part of our natural immune system to keep inflammation and autoimmunity under control. They appear to be defective in lupus and may partially be one of the causes of lupus. Their function is even worse when they are taken from patients with active disease. Thus the plans are to use cells we can derive from the bone marrow of nonaffected individuals or from umbilical cords.
What have you found so far, and how promising are those results?
What we have found so far is that cells from lupus mice are not as effective in suppressing disease in mice as are cells from normal mice. In human studies, we have found that, in the test tube, cells from lupus patients vary in their function, but overall are not as useful as cells from umbilical cords. They also do not appear to be able to treat disease in lupus mice as well as the umbilical cord cells can. We are now in the process of deriving these cells in a clean, sterile environment that meets FDA requirements for treating humans with the cells.
What are your next steps with this research?
The next steps are to complete our preliminary derivations in a clean cell environment and obtain FDA and IRB approval to perform human Phase I trials. If those go well, as we anticipate, then we would want to perform a controlled multi-center trial to definitively established effectiveness. A similar trial is planned in Europe, however, they will be using industrial produced cells, which there are reasons to believe are not as effective as more individualized derived cells due to the number of times the cells are grown, frozen, and thawed.
Have you seen an increase in stem cell research—adult or otherwise—over the past several years, and what would you attribute it to?
There is a huge increase in interest in stem cell research. This is in recognition of the great promise these cells hold not only for treating disease but possibly repairing damage.
What have been the hurdles in the path of stem cell research for lupus?
The hurdles are a misunderstanding that there are many different types of stem cells. The fetal stem cells that are controversial are in no way related to most stem cell research, which uses cells derived from adult individuals. This misconception has led to concerns regarding funding this type of research. Since it is cellular research, it is more time-consuming and expensive, initially. Finally, the FDA’s rules regarding stem cells are appropriately strict, much more so than similar agencies in Europe and China. Thus, it has been more difficult to get these therapies into the clinic in the United States.
Post originally taken from http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=4679&zoneid=76
Federal sequestration cuts are expected to dramatically affect funding for all areas of health care research. But nowhere, perhaps, would the effect be more chilling than in the still-fledgling field of lupus research.
The automatic cuts would become effective January 2, 2013, unless Congress intervenes, and would sharply curtail the pipeline of research funds flowing to scientists through the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration. As physicians who have devoted our careers to biomedical/clinical research, we are worried about the effect the cuts will have on the very recent but hopeful progress that has been made in lupus research, and also on the viability of our academic institutions and others like them around the United States.
The NIH estimates that if the cuts go into effect, funding for 2,300 biomedical grants– nearly a quarter of all new grants—would be lost. Seminal laboratories that took decades to build, and that are critical to the future of American leadership in biotechnology, would be forced to close doors. Talented scientists would have no choice but to stop doing research.
The greatest impact would be on researchers who work on lesser-known but chronic diseases such as lupus. Dollars and infrastructure for lupus research have always lagged far behind the resources available to other diseases of similar severity and risk for mortality.
Lupus researchers, especially those in academic centers where most new discoveries and drugs originate, have already felt the effects of government belt-tightening in recent years. More cutbacks would set them back by years and could result in the loss of an entire generation of researchers.
The NIH currently funds most lupus research, with the Department of Defense and nonprofit groups, including the Lupus Foundation of America, providing the remaining dollars. Thanks to these sources, we have recently made progress and now have important clues to the origins and workings of this mysterious disease. Although many promising treatments have failed in clinical trials, we finally have the first drug specifically developed to treat lupus in more than 50 years, Benlysta.
Every day, people with lupus experience the implications of inadequate research funding for the disease. The absence of diagnostic tools means that they often wait years before getting an accurate diagnosis. And the dearth of new, safe treatments targeted to lupus means that the standard of care is to use immune suppressive drugs that were developed to treat other diseases and that are not properly tested or FDA-approved for lupus. These treatments often cause as many symptoms as they address, have the potential for immediate severe side effects, and a near-guarantee of long term toxicities.
We understand that cost-cutting is a necessary response during tough economic times. There are many good reasons, however, why Congress needs to prevent these draconian cuts from happening. Biomedical research impacts America in many ways: it contributes to the future of business, supports jobs in the field of biotechnology, and it makes us a leader in modern medicine. But, most importantly, we need to preserve funding for biomedical research because it means the difference between sickness and health for so many people.
Gilkeson, M.D., is chair of the Lupus Foundation of America’s Medical-Scientific Advisory Council and professor of medicine and associate dean of faculty affairs and faculty development at the Medical University of South Carolina in Charleston, S.C.
Merrill, M.D., is the medical director of the LFA head of the clinical pharmacology research program at the Oklahoma Medical Research Foundation and OMRF professor of medicine at the University of Oklahoma Health Sciences Center.
Post taken from www.lupus.org and www.thehill.com.
My name is Steffani. I am a daughter, a friend, a girlfriend, a nurse. I am
a typical girl living in Cleveland, Ohio at the age of 24. I thought
nothing could penetrate the safety of my world, as most young adults tend
to imagine. Life, however, plays by its own terms, and a diagnosis of lupus
came knocking when I least suspected it. What a birthday present - 23 years
old and diagnosed with systemic lupus. My world was crumbling around me.
The next few months brought nothing but heart-wrenching news. My friend was
killed in an ATV accident, my best friend’s step mom succumbed to cancer,
my cat ran away, and I was a new nurse. I felt as if I was being punished.
For what, I wasn’t sure, but the pain was more than I could handle. My body
was changing- my hair started falling out, the rash on my face, arms, and
chest never went unnoticed by a stranger, my bones were aching, depression
was hitting hard, 20 lbs of body weight vanished. I’ve learned, however,
that in order to rise above the sadness, sometimes you have to hit rock
bottom to push off the surface and start your climb. But the thing that
became clear was that I didn’t have to climb alone. Family and friends
banded together to give me their hands. I was reminded how powerful love
can be in the face of darkness. I was reminded that I’m a fighter. I was
reminded that survival is what we put forth. I was reminded that I couldn’t
give up. I feel now as if I’ve been given a second chance to be a better
person because of my diagnosis, to make every day count. Too much time is
wasted on being selfish, lonely, angry, guarded, and afraid. Every song has
an ending, but that’s no reason not to enjoy the music. Living with lupus
has taught me to take better care of myself- to be healthier, kinder, and
to love and laugh more often. Life is a precious commodity. Lupus has
taught me to embrace that idea. To appreciate my loved ones without fail,
to believe that I am a strong woman, and to never stop dancing when
hardships threaten to turn off the music. My name is Steffani, and I’m
proud to be a lupus patient.
Walker of the Week : Jessica Tufts
Her Story In Her Own Words
When asked to share my story of why I signed up to walk in the Walk for Lupus Now community event, so many reasons came to mind. I am walking in support of two of my sorority sisters who are battling Lupus. One of the founders of my sorority, Nu Omega Psi Sorority, Inc. and my line sister have both been diagnosed with Lupus. I have seen firsthand how this disease affects them both physically and mentally, and that alone drives me to raise funds and awareness for this unpredictable and life-threatening disease. Bringing awareness to Lupus is extremely important to me and my sorority sisters.
Nu Omega Psi Sorority, Inc. promotes community, service, and sisterhood by actively supporting various community events and organizations. The Lupus Foundation of America is one of our main philanthropies and this year we have participated in the Walk for Lupus Now event in three different states. While walking in this event not only will I be walking for those affected by Lupus, but I will be representing my sorority! This means a lot to me because Nu Omega Psi was recently founded in 2007, yet we are consistently growing and staying true to our principles. We continue to accomplish many things as a black-founded, independent, service and social Greek-lettered organization. We strive to always promote the importance of service, education, and sisterhood through our journey as a sorority for many years to come.
My name is Courtney Clough and I was diagnosed with lupus in early 2004. My disease started off as cutaneous with some very mild systemic symptoms. I was immediately started on Plaquenil and had an allergic reaction to it. I was switched to Methotrexate which made me very sick and gave me bald spots. I tried to give the Methotrexate a chance, but I felt worse on it than I did without it. We found that Imuran was what worked best for me. I was under very good control and pretty flare free until the Summer of 2011. I went to an outdoor festival and thought that wearing sun block with repeated applications was enough. I subsequently spent 10 months in flare. I was started on Benlysta in December 2011 and my rheumatologist and I decided that I would start Prednisone in May 2012. Like most Lupus patients I have my good and bad days. My good are really good and my bad days are really bad.
Today I am doing pretty good. I push through the disease process and try not to let it run my life. When I get tired, I go to bed. To add to my story I also got sober in June 2011. I have been sober for a little over a year and am working through a program of recovery. I hope that in the future I will be able to help other alcoholics and addicts who are dealing with Lupus.
I walk to help fund research, education programs and to prove that just because I have Lupus does not mean that I am always sick. I really enjoy the positive energy at the Walk for Lupus Now events and am really excited for the 2012 walk.
Theresa DuBroy : Her Story In Her Own Words
I am walking for Lupus because it is something I can “do”. My daughter, Kristen, 22, was recently diagnosed with Lupus. It took the doctors eight months to make the diagnoses. Watching my daughter fight through headaches, fatigue, chest pain, joint pain, in and out of the emergency room and many doctors telling her everything was “normal” was very frustrating and heart breaking for me. I wanted to “fix” it…I still do. I know I can’t fix it, but I can walk. I hope “walking” will raise awareness and money to help Kristen and others with Lupus.
