Free lupus seminar to be Sept. 6

More than 1.5 million Americans suffer with lupus, a chronic autoimmune disease that causes such symptoms as painful swelling of the joints and inflammation of the major organs including the heart, lungs, kidney and brain. There has been little advancement in treatment for lupus until recently with a breakthrough in medications.

On Saturday, Sept. 6, a free lupus seminar will be held from 9 a.m. to noon at the Kauffman Foundation Conference Center, 4801 Rockhill Road, Kansas City, Mo. Sponsored by the Alliance for Lupus Research and its Greater Kansas City Walk with Us to Cure Lupus walk, the seminar will provide the very latest information about Lupus treatment and research into a cure. Lunch will be provided and parking is free.

The seminar is part of the ALR’s educational efforts and outreach in the Greater Kansas City area. It is a “warm up” event for Kansas City’s Walk to Cure Lupus that will take place on Saturday, Oct. 11, at the T-Bones Stadium at CommunityAmerica Ballpark located at the Legends in Kansas City, Kan. Former Kansas City Chiefs Eddie Kennison is the walk chair; Kennison’s wife Shimika has lupus.
The seminar will include presentations by several local physicians. Topics include:
• Management of common lupus symptoms
• Current medicals for lupus
• Current and new potential treatments for lupus
• What is known about the cause of lupus

• Cardiovascular risk with lupus and what can be done about it

Those interested in attending should RSVP to Leslie Crouch with ALR at [email protected] or call 800-867-1743 ext. 6105. Provide first and last name and a phone number where you can be reached.

Eddie Kennison, who retired from the Kansas City Chiefs in 2010 after 13 years in the NFL, was one of the Chiefs’ most philanthropic players. Kennison started his own foundation, Kennison’s QuickStart Foundation, in 2003 after Shimika was diagnosed with Lupus and entered into a formal partnership with the ALR and continues to chair the ALR’s Greater Kansas City area annual walk, Walk with Us to Cure Lupus.

One hundred percent of the proceeds raised by the ALR Walk go to support lupus research because the ALR board of directors funds all administrative and fundraising costs. To register for the Kansas City Lupus Walk or make a donation, please visit www.lupuswalkkc.org.

Systemic lupus erythematosus (SLE, or lupus) is a chronic autoimmune disease that can affect the joints and almost every major organ in the body, including the heart, kidneys, skin, lungs, and brain. As many as 1.5 million people in the United States have lupus which affects mostly women during childbearing years, though men and children can have the disease. Lupus is three times more common in African-American women than in Caucasian women and is also more prevalent in women of Latino, Asian, and Native American descent.

Doctors call for delay in proposal to change liver transplant distribution method

Doctors at The University of Kansas Hospital are joining 45 liver transplant programs from Missouri, Florida, Texas, Colorado, Georgia, North Carolina, Virginia, Ohio and Michigan, among others, calling on the United Network for Organ Sharing to delay consideration of a controversial proposal to distribute livers nationally instead of regionally.

Collaborating doctors say that, despite claims of the UNOS “Share 35” proposal, more lives will not be saved. In addition, patients with liver illnesses in affected regions will be put at greater risk and the plan will add an estimated $30 million annually to liver transplantation costs — paid for largely by taxpayers.

Currently, sharing of donor livers happens among the sickest patients within 11 designated regions. Now, UNOS is proposing expansion of the regional borders which will result in donor livers traveling even greater distances. Doctors with the programs above are certain that regions required to export livers will see more patients in those regions growing sicker while waiting longer for a transplant and surviving less. Doctors say much more data must be collected over the next two years on the impact of such a plan before making sweeping changes to existing policies.

“We know UNOS is working with every resource available to find a better way, but it is not good medicine to rush into radical change without a good understanding of unintended consequences,” said Dr. Richard Gilroy, medical director of liver transplantation at The University of Kansas Hospital, Kansas City, Kan.

Increasing organ donations
In the Midwest Region 8, organs are donated at a higher rate (82 percent) compared to anywhere else in the nation. Rather than taking organs from higher donation areas in the Midwest, South and Southeast, and giving to patients in large coastal cities that do not have higher donation rates such as New York (55 percent) and California (71 percent), doctors propose a different solution.

“The only way to save more lives is to increase organ donation in other regions,” said Dr. Timothy Schmitt, director of transplantation at The University of Kansas Hospital. “Flying livers across the country from high donation regions to lower donation regions removes any incentives for those donation programs to get better.”

More importantly, Dr. Schmitt noted, “By simply reallocating where livers go without increasing donations, you only change where people die waiting for a liver. Areas which can transplant at a lower MELDS (medical severity score) only do so because of the generosity and spirit of donation in those communities.”

Sharing among regions already happens
The Midwest Transplant Network shared more than half of all donated organs with other regions and 34 percent of all livers with other regions last year, so the region’s excellent donation rate already helps other parts of the country. The Midwest Transplant Network, Gift of Life, donor families, Region 8 organ recipients and health care leaders are calling on the public to register to donate organs in all Regions across the United States – especially the areas that have lower donation rates – and for UNOS to slow the process of adopting a new allocation proposal until it is thoroughly vetted including more data and unintended consequences.

“The foundation of all organ transplants is the gift of donation,” said Dr. Schmitt. “By partnering with the local organ procurement organizations, as we do with Midwest Transplant Network as well as Gift of Life, we have proven donations can be significantly increased. It’s hard and challenging work. Increasing donations should be the number one priority, instead of spending resources on a risky allocation plan.”

Added travel times for livers
Travel times also affect the health of livers and prognosis for successful transplants. “With the new proposal, there will be more cold time on organs shared nationally instead of regionally,” said Dr. Gilroy. “It will be on ice longer and it may not work as well.”

Members of the Region 8 transplant community will travel to Chicago Sept. 16, to participate in a public hearing before UNOS.

To see a KU Hospital video about this topic, visit

– Story from KU Hospital

Hot, windy weather in today’s forecast

National Weather Service
National Weather Service

In what might be the last blast of summer, today’s weather forecast calls for a high of 93 degrees, with a heat index as high as 99.

Winds will be 14 to 20 mph with gusts as high as 28 mph.

Thunderstorms will develop tonight as a cold front approaches.

The front will be slow moving with storm chances continuing through Friday and into early Saturday. Severe weather probabilities remain low at this time.

Temperatures will drop to a high of 77 on Friday, with a chance of storms, and 74 on Saturday, with partly sunny skies.