You are invited to join the Lupus Foundation of America in Washington, D.C. for our 2008 Lupus Advocacy Day!

• Monday, March 10, 2008 - Westin Alexandria Hotel
• Tuesday, March 11, 2008 - Capitol Hill, Washington, D.C.

Our two-day 2008 Lupus Advocacy Program will commence on March 10th with a training session and dinner at the Westin Alexandria Hotel to discuss how to make the most of your meetings with your Members of Congress. On Tuesday, March 11th, the LFA, as well as chapter representatives, lupus physicians and researchers, and other advocates will travel to Capitol Hill to meet with Members of Congress and inform them about how debilitating lupus can be.

The LFA needs you and your friends and family members to visit your federal Representatives and Senators to urge them to support more funding for lupus research and education.

Register now at http://www.lupus.org/newsite/pages/2008AdvocacyDayRegistration.htm

The registration fee for Lupus Advocacy Day is $35 per person, which includes dinner on March 10th and breakfast on March 11th. The room rate for the Westin Alexandria Hotel is $229 per night.

If you have any questions, please contact Sara Chang at chang@lupus.org or by phone at 202-349-1169.

   Monday, December 10th Is The Last Day To Place Your Orders For Christmas Delivery!

YEAH KENDRA! Our very own cure4lupus organizer has put together a walk in Iowa and had an article written about it below! YOU GO GIRL! hugs,
Jayne
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Kendra Isola, 29, of Urbandale helped organize the Iowa Walk for Lupus Now, scheduled for today at Gray's Lake. The goal is to raise $40,000 for lupus research. Isola has dealt with depression related to lupus, a disease affecting the immune system. Get involved
WHEN: The first Iowa Walk for Lupus Now is from 9 a.m. to noon today at Gray's Lake, 1400 Fleur Drive in Des Moines.
COST: There is no cost to walk but donations will be accepted. Donors who give $50 or more will receive a T-shirt.
DETAILS: Organizers with the Iowa chapter of the Lupus Foundation of America hope the event can be an annual one. For more information, go to lupusia.walk.kintera.org.

Woman fights lupus, sets up fundraiser 

She says her role in today's walk gives her purpose



By GUNNAR OLSON
REGISTER STAFF WRITER


It took two years of deep depression and a move home to Iowa before Kendra Isola figured out who she was.

She was never going to be the mother and business owner she struggled to become while living in Florida. Lupus - which turns the immune system against its own body, attacking its healthy cells - had rendered her physically unable. Her joints hurt so badly that getting through the day felt like running a marathon.

"I had this image of myself of who I should be - healthy, strong, working hard," she said. "And I couldn't reconcile that I wasn't that person. I didn't like who I was."

Two years after moving back to the Des Moines area for better health care and to be closer to her family, Isola is excited about her new life as an advocate for fighting lupus.

Isola, now 29, is one of the organizers of the first Iowa Walk for Lupus Now, to be held from 9 a.m. to noon today at Gray's Lake in Des Moines.

Organizers with the Iowa chapter of the Lupus Foundation of America are aiming to raise $40,000 for research for a cure to lupus. They hope the event will be an annual one.

An estimated 1.5 million Americans live with some form of lupus, which is difficult to diagnose and sometimes fatal, according to the Lupus Foundation of America.

The federal Food and Drug Administration has not approved a new drug to treat lupus specifically in 30 years, according to the foundation.

"We have so much hope on the horizon," Isola said. "We can have a cure - or at least better treatment - soon."

Sara Webster, a Sheldahl resident who also has lupus, said she quickly came to admire Isola while working with her to organize the lupus walk.

"Her life has gone in a different direction," she said. "Her life has changed and she's accepted it and she's doing it for the greater good."

It was in Florida about four years ago that Isola had nearly built the life she always wanted. She was recently married, was starting a career selling real estate, and was looking forward to raising a family.

Having lupus was something she just dealt with - she had done that since first showing symptoms at 13.

Then she started missing meetings with clients and quit her job. She learned she couldn't have kids.

Isola fell into a depression that would last two years. She stayed at home and watched 12 or more hours of television every day, sleeping the rest of the time, always exhausted.

Her husband was supportive, but her state wore on him visibly, and that depressed her further. They spent thousands on her medications.

They evacuated their home for Hurricane Wilma in 2005, and she made up her mind then that she wouldn't return.

Sitting in the Urbandale duplex she now shares with her husband and father, Isola recalled her slow ascent from depression once she arrived in Iowa two years ago. She said she still spends a lot of time sleeping and in front of the TV.

Being around family helped, she said, but it was launching a Web site, www.cure4lupus.org, that ultimately pulled her out of depression. Sharing her story, letting others with lupus know they are not alone, has given her purpose.

Six months after launching her site, she created a page on MySpace.com, the social networking site, and within weeks she started receiving e-mails by the hundreds from people like her. "Once I found this way to reach out to people and make a real different, I started liking who I was becoming," she said.

Reporter Gunnar Olson can be reached at (515) 284-8039 or golson@dmreg.com

Learn About HSS Programs that Promote Lupus Education and Support

Most people are unaware of how life-threatening lupus can be. It often manifests itself internally, preventing outsiders from understanding the pain, fatigue, stress, depression, and many other symptoms that are coupled with the illness. Since little is known about the illness throughout the communities it affects the most, lupus awareness and education is critical.

Some quick facts about lupus:

• Systemic Lupus Erythematosus (SLE) can vary from a mild condition to a life-threatening illness, which causes disease by attacking a person’s autoimmune system. It can inflame joints and attack kidneys, hearts, lungs and liver, leading to pain, dysfunction, and sometimes permanent damage to healthy tissues.

• Approximately one and a half to two million Americans suffer from this potentially fatal autoimmune disease, and 90% of those are women.

• Most women are stricken during their childbearing years.

• Most people develop their lupus between the ages of 15 and 45.

• Asians, African Americans and Latina women are 2-4 times more likely to have lupus than Caucasian women.

Hospital for Special Surgery offers a variety of free support and education programs for people with lupus:

LupusLine, a national telephone peer counseling service, links callers with trained volunteers who have lupus. Since its inception in 1988, LupusLine has helped more than 16,000 patients and their families. Call 866-375-1427 toll-free. Hospital for Special Surgery's LupusLine Program, made possible through funding by Rheuminations, Inc., reaches out to the communities we seek to serve in cooperation with the S.L.E. Lupus Foundation.

Charla de Lupus, a peer health education program, links callers with trained volunteers who are lupus veterans, with a particular emphasis on reaching Spanish-speaking communities. The program also offers monthly Teen and Parent Chat Groups in New York City. Call 866-812-4494 for assistance in English and Spanish. Charla de Lupus, offered by Hospital for Special Surgery, is made possible through funding by Rheuminations, Inc.

LANtern, a peer health education program that supports, empowers and enhances the quality of life of Asian Americans and their families with lupus, initially targeting the Chinese American community. Call 866-505-2253 for assistance in English, Cantonese and Mandarin. Hospital for Special Surgery's LANtern Program, made possible through funding by Rheuminations, Inc., reaches out to the communities we seek to serve in cooperation with S.L.E. Lupus Foundation, Inc., Charles B. Wang Community Health Center, Chinese Community Partnership for Health, NYU Downtown Hospital, Hospital for Joint Diseases, and the Center for the Study of Asian American Health at the NYU School of Medicine.

SLE Workshop, an informal forum held at Hospital for Special Surgery in which lectures by prominent lupus experts are followed by group discussion. Call 212-606-1033.

In addition, we are pleased to offer two award winning publications to those interested in the disease:

• For Inquiring Teens with Lupus: Our Thoughts, Issues & Concerns, a teen-focused educational booklet. Call 866-812-4494 toll-free for a copy.

• What Chinese-Americans and their Families Should Know About Lupus, a Bilingual English/Chinese culturally relevant informational booklet. Call 866-505-2253 toll-free for a copy.

• Senseo® Single Serve Coffee Pod System
• Bag of Senseo® gourmet coffee pods
• Senseo® Coffee Pod Canister for easy pod storage and long-lasting freshness
• 5 $20-off Senseo® coffee machine cards to share with friends and family

Thanks for your interest.

The Share Senseo® Team

*Participants must pay shipping and handling fee of $15

May 12th, 2007 *
McAllister Park,
San Antonio, TX
Check-in begins at 9, Walk begins at 10 * Rain or Shine * 5K (3.1 mi)

..> ..>

..> ..> Walk!

..> ..> Sponsor a Walker!

  Please click here if you are interested
in participating in the walk!

April 28th, 2007 *
Lakeview Pavillion,
Old Settlers Park, Round Rock, TX
Check-in begins at 9, Walk begins at 10 * Rain or Shine * 5K (3.1 mi)

..> ..>

..> ..> Walk!

..> ..> Sponsor a Walker!