The Lupus Foundation of America Utah Chapter Celebrates 30 Years

I’m participating in this walk to support my wife who has been living with lupus and its devastating complications for nearly 5 years. I have seen first-hand just how unpredictable and cruel this disease can be and my hope is that one day there will be better treatments and a cure for lupus, which impacts the lives of millions of Americans. ~ Washington, UT resident Ron Brown

As part of the celebration of May as Utah’s Official Lupus Awareness Month, the Lupus Foundation of America, Utah Chapter, Inc. will host its annual Walk To End Lupus Now™ in Salt Lake City, May 2nd at Liberty Park at 600 East 1000 South.

“My family and I walk together to end lupus. I can honestly say, there’s no way I would have made it where I am or become the positive woman I am today without all the amazing people and support of The Lupus Foundation. Not only have they become devoted friends that understand my battle, but they have also offered an immeasurable help with the surmounting financial burden that comes along with a transplant and this disease. The Lupus Foundation’s assistance has helped me from having choose between living costs and medical cost, which is all in one for any person with Lupus,” states Shalyse Lopez.

Additional events during Utah’s Official Lupus Awareness Month include an evening colorful fluorescent-lighted Hippie Run on May 9th, and POP (Put on Purple) Day during World Lupus Day, May 15th.

Shalyse’s story is just one of thirty that the LFA Utah Chapter is spotlighting this month at the walk and on its website and social media sites as part of the chapter’s 30th anniversary education campaign: 30 Stories for 30 Years.

Additional events during Utah’s Official Lupus Awareness Month include an evening colorful fluorescent-lighted Hippie Run on May 9th, and POP (Put on Purple) Day during World Lupus Day, May 15th.

Lupus is more common than multiple sclerosis, leukemia, cystic fibrosis and sickle cell anemia combined, yet most people in the age range that is most greatly affected—15 to 44—know little

to nothing about this auto-immune disease that can attack the brain, lungs, liver, kidneys, central nervous system, and/or joints in waves called “flares” and “remissions.”

There is no single test for lupus, and only one drug in fifty years has been approved specifically to fight lupus—though that one only works on a narrow segment of lupus patients. Instead, lupus patients commonly receive chemotherapy or drugs made for other diseases, such as malaria.

The LFA Utah Chapter is working to increase public knowledge and understanding, funding critically needed research programs and providing local support programs and services to those who suffer from its brutal impact.

Registration for The Walk to End Lupus Now™ is open online at www.utahlupus.org or by called 1-800-657-6398. Participants can also create a personal fundraising page on the walk website to raise money, recruit new team members, and get valuable fundraising tips.

The LFA Utah Chapter has many programs that take place throughout northern and southern Utah. The Foundation will host its next H.E.A.L. program (Health Education & Awareness of Lupus) in Salt Lake City in June. This is an opportunity for people with lupus and their families to learn about the latest developments in lupus research and treatments from some of the nation’s leading lupus experts. The chapter offers support and programs to help lupus patients pay for medications and related expenses. Social Butterflies, a monthly community support group, takes place in Salt Lake, Utah County, and Southern Utah.

“Why I walk”

Connie Yang – I walk because I am hoping to raise awareness about lupus so that people can understand us better.

Amber Tyree – I walk for my mom who has been dealing with this nasty disease for 19 years. Julie Jewels – I walk for my daughter who has suffered from this disease since she was 9 years old.

Stacy Palmer Knox – I walk for my grandma that passed away from lupus almost 4 years ago.

Jamie Stephensen – I walk for myself and the hopes of finding a good treatment and a possible cure! Also for my friends and family who are my rocks!

Jody Powell – I walk for my husband who struggles with this disease every single day but still manages to be an amazing dad to our children.

Cher Bryant – I walk for myself. I like to help raise money to help find a cure and I love being around family and lupie friends.

Julie Dennerline Barnes – I walk for the love of a young friend that has the horrible disease and many others.

Gina Vongphouthone – I walk to end lupus and to support others that are living with lupus.

ABOUT LUPUS

Lupus is an unpredictable and misunderstood disease in which the immune system is out of balance, causing damage to any organ system in the body. The exact cause of lupus is unknown. Lupus can strike any person at any time, but 90 percent of lupus patients are females between ages 15 and 44. Minority populations are at especially high risk. While lupus can be disabling and fatal, the disease can be managed in most cases through aggressive medical treatment.

ABOUT THE LUPUS FOUNDATION OF AMERICA

The Lupus Foundation of America is the only national force devoted to solving mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all lupus affected by lupus. Learn more about the Lupus Foundation of America at lupus.org. For the latest news and updates, follow us on Twitter and Facebook.