Lupus Foundation of America, Greater Ohio Chapter

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.

Permalink June seems to by flying by. With summer solstice comes warmer weather, time for family and more opportunities to get involved with The Lupus Foundation of America.
June 15 was our 2nd annual Walk to End Lupus Now in Columbus. Over 400 family members, friends and lupus supporters walked at Bicentennial Park and fundraised over $35,000 in support of lupus research and patient programs.
Missed the Columbus walk? Not a problem. Our 16th annual Walk to End Lupus Now in Cleveland is on September 28 at the Brecksville Reservation Oak Grove Pavilion. Sign up to walk for a minimum $20 donation, make your own fundraising team or simply support the cause by giving. No matter what you give, every little bit helps raise awareness for the cruel mystery!
The National Lupus Advocacy Summit is right around the corner. On June 24 and 25 lupus patients and activists, including the our very own President and CEO, Suzanne Tierney and three lupus patients from Ohio will meet their congress members in Washington DC. This is our chance to educate policy members on the importance of lupus research.
Enrollment is filled; however, you can find out more information on the event on lupus.org
Our monthly support programs are ongoing. If you’re looking for some extra motivation and support, check out our groups in Cincinnati, Cleveland and Columbus on the Lupus Foundation of America, Greater Ohio Chapter website.

Did you know we’re social? Stay up to date by following us on Twitter, Facebook, LinkedIn, Pinterest and Instagram.
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May 26-June 1

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! 

Permalink Brittney is making a difference. You can make a difference, too! Sign up to Walk To End Lupus Now!
http://walktoendlupusnow.kintera.org/faf/home/default.asp?ievent=1056314
Permalink Thank you to Missy Bell, top walker in Cincinnati from 2012, for her inspiring story! It’s so important for us all to remember that in our lupus journey we are NOT alone!
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Dr. Gary Gilkeson Discusses Adult Stem Cell Therapy for Lupus

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

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The Hill: Sequestration Cuts Could Seriously Impair Lupus Research

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.