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Lupus Foundation of America Seeks to Elevate Lupus on the Nation’s Healthcare Agenda

WASHINGTON, Feb. 26 /PRNewswire-USNewswire/ — The Lupus Foundation of America will hold its annual Advocacy Day to elevate lupus on the nation’s healthcare agenda on Thursday, March 1. Lupus affects 1.5 to 2 million Americans, mostly women, with the highest prevalence among women of color.
Why:
It has been more than 40 years since the FDA last approved a new treatment for lupus. Current therapies include the off-label use of high doses of steroids, anti-malarials, and chemotherapy drugs which can cause other health problems that may be worse than the primary disease. People with lupus want safer and more effective treatments.
Participants:
350 individuals with lupus, family members, clinicians and medical researchers from throughout the U.S.
When & Where:
Wednesday, February 28 — Westin Arlington Gateway Hotel, 801 North
Glebe Road, Arlington, VA
2:00 p.m. – 3:30 p.m.

Speakers:
Francis Ashe-Goins, R.N., M.P.H., Deputy Director and Director of the Division of Policy and Program Development, Office on Women’s Health, U.S.
Department of Health and Human Services — “Update on OWH’s Lupus Awareness Projects” Gary Gilkeson, M.D., Medical University of South Carolina, Charleston, South Carolina; Chair, LFA Medical-Scientific Advisory Council — “Research Priorities for Lupus — Why Funding is Needed Now” Sam Lim, M.D., M.P.H., Assistant Professor of Medicine, Emory University, Atlanta, Georgia; Principal Investigator, National Lupus Patient Registry (NLPR) — “Update on Data Collection for the NLPR — What We Have Learned to Date” Michelle Petri, M.D., M.P.H., Professor, Johns Hopkins Medical Institutions; Co-Director, Hopkins Lupus Pregnancy Center — “Overview of Lupus Research Funded by NIH”
5:00 p.m. to 8:30 p.m.
Speakers:
Congressman James Clyburn (SC-6); House Majority Whip
Congressman Jim Moran (VA-8)
Vivian Pinn, M.D., Associate Director for Research on Women’s Health;
Director, Office of Research on Women’s Health, National Institutes of
Health — “Update on Women’s Health Research at NIH”
Thursday, March 1, 2007 — Room G 50, Dirksen Senate Office Building
12:00 p.m. to 2:00 pm
Speakers:
Richard Burt, M.D., Associate Professor and Chief, Division of
Immunotherapy for Autoimmune Diseases, Northwestern University, Chicago,
Illinois — “Update on Stem Cell Transplantation as a Therapy for Severe Lupus”
Congressman Patrick Kennedy (RI)

Other members of Congress expected to deliver brief remarks
CONTACT: Duane Peters of the Lupus Foundation of America,
+1-202-349-1145, peters@lupus.org.
SOURCE Lupus Foundation of America

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  • 2 Responses to “Lupus Foundation of America Seeks to Elevate Lupus on the Nation’s Healthcare Agenda”

    1. sandie Says:

      Mike: So many people are not aware of Lupus. I have a girlfriend from Indianapolis who has a 29 year old daughter who has been told by doctors that she has lupus. They started her on steroids and the poor thing looks like Barry Bonds now. Is there a book on natural herbal remedies? I saw on the news this morning that a close friend of Anna Nicole Smith’s said that they were told in confidence that Anna had lupus and was being treated for lupus? My question to you, is Methadone a treatment for lupus? Can lupus be passed to a baby in the womb if the mother has lupus? This is a disease people need to be made aware of because it is not heard frequently. What causes Lupus? How does one get lupus?

    2. Mike Odom Says:

      Sandie,
      Yes, Lupus awareness is one of my goals. So many people are not aware of the disease and may even have it because they are not properly diagnosed.

      The steroids can be a big problem in the life of a lupus patient. I have to look at the drug as a necessary evil. The side effects are not good.

      There is a great deal of pain associated with lupus. However, I have not heard of a drug as strong as methadone being prescribed for the pain. Celebrity doctors can be easily co hearsed into prescribing what the patient might want and not what they need.

      Lupus is hereditary. However, a person can go through most or all of their life before it may becomes active. It is truly a mystery disease. This is why there needs to be more government funding for the research of lupus! Here are some numbers to back this statement up:

      lupus, a life-threatening autoimmune disease that largely affects minorities, has a much lower profile then other diseases of its kind. Although 1.5 million US citizens suffer from lupus, the National Institutes of Health (NIH; Bethesda, MD, USA) allocated only US$88 million for research in 2005, down from US$96 million in 2003.

      Lupus will receive another US$25 million from non-profit organizations, according to Duane Peters, Vice President for Advocacy and Communications at the Lupus Foundation of America (Washington, DC, USA). There are about one million patients diagnosed with HIV/AIDS in the USA, and research received a total of US$2,981 billion from the NIH this year.

      Sad!

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