About Us - Utah Chapter

About the Lupus Foundation of America, Inc.

Mission Statement and Programs Objectives

The Lupus Foundation of America, Inc. (LFA) is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus.

The LFA energetically pursues its mission through five program objectives:

Provides direct financial support to researchers through LFA's own national research program, Bringing Down the Barriers
Advocates for increased public and private sector support for research on lupus
Translates research findings into medically sound information and programs for people with lupus, their families, physicians, and other health professionals
Heightens public awareness of the impact of lupus
Supports individuals with lupus, their families and caregivers

CONTACT US

We always look forward to hearing from you!

Lupus Foundation of America, Utah Chapter, Inc.
455 East 500 South, Garden Level 2
Salt Lake City, UT 84111

801-364-0366
800-657-6398

info@utahlupus.org

If you want to provide us with a little more detail about yourselves, please fill out our online contact us form.

ABOUT US - YOUR UTAH CHAPTER BOARD, STAFF & OUR STORIES

Noelle Reymond, Executive Director

Two and a half years ago, at twenty-seven years old, I was married with 5-year-old twin boys and was just two years into establishing my growing midwifery practice when my life was turned upside down. I believe I had symptoms going back many years, but as the symptoms grew, so did my excuses for them until I awoke with vertigo and ended up in the ER. I was admitted with meningitis and, as a mystery, testing negative to all general Lupus tests. Twenty-four hours later, lying in my hospital bed with my husband beside me, I stopped breathing. I was intubated, and from there it only became worse. I was in multi-system failure, and on life support. My family and friends were at my side as I slid in a coma. They were told to say their goodbyes. For the next four weeks I stayed on life support in the Intensive Care Unit suffering strokes, seizures, signs of brain damage, extreme kidney hemorrhage and more. Within those four weeks my family was given my Lupus diagnosis. With the support of family and friends who wouldn’t take no for an answer, I awoke from the coma and spent two months in the hospital learning to walk, talk, breath, swallow, and live again. After leaving the hospital my life had completely changed. As a midwife, I truly felt that I had the most amazing job in the world. Helping bring life into the world and being a voice for women was exactly where I wanted to be and I thought I would spend the rest of my life continuing down that path. It was very clear that I could not continue as a midwife after the coma. I have had major central nervous system involvement and I don’t know if I will ever be able to practice again. I did know that I had to do something. I became a member of the Lupus Foundation, and began volunteering in the office one day a week. I joined the board in the spring of 2006 and recently became executive director. I am amazed at the potential of this board and foundation. I look forward to being a part of what is to come.

Katie Fillnow, President

I have been a member of the LFA Utah Chapter for almost 2 years. I have been involved with our Dr. Office information and education project, the Walk for Lupus Now and providing support for our members by being available in our chapter office.

I was like many people and was not aware of what Lupus is, how it affects a person and how serious this illness can be. It wasn't until my close friend was hospitalized and slipped into a coma that I realized the effect Lupus has on an individual friends, family and the community. She like many went through several tests that were inconclusive until finally the diagnosis of Lupus was given to her. She currently lives a life with great determination, she is a wonderful mother and a loving friend but I know that some days are painful. The Lupus Foundation of America (LFA) estimates between 1.5 - 2 million Americans have a form of lupus, but the actual number may be higher. More than 90 percent of people with lupus are women. Symptoms and diagnosis occur most often when women are in their child-bearing years, between the ages of 15 and 45. I started volunteering with the LFA Utah Chapter to increase my understanding of Lupus, to help educate others, and help to build a support network for people with Lupus, their friends and family.

As president I hope to continue with our community outreach as well as bring the community in to us. We are looking for volunteers, board members and people interested in providing their talents, to come into our office and become a part of something special. Please come and meet me and other board members of the LFA, Utah Chapter inc.

Tabitha Thompson, Vice President

The Claw. It really came down to diagnosing The Claw: my arm curled up and my hand tightened until to move it at all caused excruciating pain. For years I had experienced tightening of my joints, but I always figured I had pushed myself to hard during a work-out or gripped hand-weights too tightly. When I went to see the doctor about The Claw the result was “lupis” -- I wrote it down wrong; I didn't know anything about it. The name itself was only vaguely familiar. My reaction was mixed and my feelings ebbed and flowed.

Elation. I really did get sick all the time: I wasn’t a hypochondriac.

I was tired for a reason: I wasn’t just lazy.

There was a cause for the pain: I wasn’t just feeling “bad.”

Terror. Was I going to die young? Was I ever going to be able to have a child?

Anger. Who said this was fair?!

Over time I came to “know” my lupus. I knew what to expect, how it affected me, how the drugs I took were to be handled. I got into a rhythm with my lupus.

Everything changed when I decided to try to have a child. Months of research and conference with doctors, discussions with family and friends. I have a wonderful healthy child now, but my lupus changed completely after her birth. It took me more than a year to get control, adjust my expectations and medications, find a rhythm again.

What I have known all along is that I want to reach out. I wanted to take the elation that came from education, the terror that challenged my hope, the anger that something must be done, and share those emotions with others, help others get diagnosed sooner, add myself to research studies, get involved. This is why I am on the board of the Utah Chapter. Because I want to connect with people, to connect people, to fight for answers, to hope for more, to DO something important with my lupus and my life.

In some ways I am grateful for my lupus. Because of lupus I don't take a single second of my life for granted. I am so grateful for my time with my family. I am grateful for my life and for my health.
I am grateful for every moment I have without pain and sickness.
I am grateful for every moment I have.
I am grateful for every moment.
I am grateful.

“To live is a gift, to feel is a blessing, and to take part in Life’s beauty is a miracle renewed each day.” — Francisco

Sonya Droguett, Secretary

“The first female President of the United States, a ballerina, an artist and a doctor . . . “

It may sound like it should end with a good punch line; but this was the list I ran down as a child when asked what I was going to be when I grew up. Mind, you these would not be in succession, but rather all at once.

Our childhood dreams and aspirations were usually grandiose and seemingly unobtainable. However, there are often identifiable themes that repeat later in life. Though my life has taken a different path, the basic tenets by which I live, have stayed the same. The constant desire and drive to do what some say can’t be done, to live fully in all aspects of my life and to be generous in mind, spirit and action.

I was diagnosed with Systemic Lupus three years ago after the birth of my only son. I had sought help for almost five years prior. It shook me to the core. I began to think my life dreams would be forever lost. I spent the first year on a long journey of emotion, research and resolve. I realized that the strength that comes from this kind of journey can’t come from anywhere else. It pulls together your ideals, your priorities and your heart and mind. It challenges your sense of humor.

My grandmother lived through World War I and II, spent time in a Nazi concentration camp, immigrated to the United States and built her life again from nothing. When asked how she worked though the most difficult times of her life, she would say in her strong Dutch accent, “You just keep going. What choice do you have?”

Her voice resonates in my head. Because of her strength, I have found my way to “just keep going.” It helped put my diagnosis in perspective with the rest of my life and I realized that in a lot of ways, it gives me a chance to give more to others – whether I am the President of the United States or just a woman with a dream from Salt Lake City.

Deanna Purcell, Board Member

Deanna was born on November 4, in Tucson, Arizona. She is an only child, raised by her mom. She met her husband Lon while attending BYU. They dated for 4 months and were married in the Oakland Temple. Lon is a talented cabinet maker and the production manager at Cottonwood Mill and Cabinet. They have four beautiful daughters, Amber, Alisha, Lori and Kyla and one foster daughter from Samoa, Jalyn. In addition she has a beautiful extended family including 3 son-in-laws, 5 grandsons, and one granddaughter.

Deanna’s favorite times are spent with her husband, children and grandchildren on vacations and continuing family traditions. She loves to travel to away BYU games with her husband. (Go Cougars!)

She has had many favorite vacation spots including all cruises, Puerto Vallarta, Puerto Rico and San Francisco.

She is an avid sports lover. She especially loves football. She enjoys swimming, piano, and playing with her grandkids.

She volunteers one day a week at the Salt Lake Temple.

Deanna has lupus. It affects her spine, joints etc. She has had numerous surgeries, including a plate and several screws in her neck. She is so positive and happy, you would be hard pressed to guess she is dealing with a chronic disease!

Her favorite motto is: “I have lupus, it doesn’t have me!”

Feli Anne Hipo, Board Member

Opportunities were falling into my lap as I was getting ready to graduate from high school. I got into a college in California, which was my top choice in places to go to college, and I had a full ride scholarship, plus room and board. What more could I ask for?

Right away I thought I wanted to be a nursing major, when my passion was writing, but I had a family friend who was the head nurse of a major hospital in San Francisco. I figured I would work that connection after I got my nursing degree, but an obstacle came my way and my plan changed. In spring of 2004, I was diagnosed with lupus. Needless to say, being a nursing major was a stressful path and triggered my first lupus flare. My father has lupus, so they tested me for it and sure enough, that was my diagnosis. It was good that they figured it out sooner rather than later, but I was in denial, as all young adults are when diagnosed with a chronic illness. I did not want to accept the fact that I had to take medications for the rest of my life and limit my social activities.

I was embarrassed to tell people that I was sick, and thought to myself, “This is temporary; I will get off these meds someday.” I transferred to Westminster College so that my family could help me take care of myself and the doctors could observe how and if the medications worked.

I moved back to Utah, and I had two more flare ups, which landed me in the hospital for almost a month each time, and I’ve taken a total of two and a half years of leave of absences from school because of those flare-ups.

It definitely hasn’t been a walk in the park, but I’m a strong woman, and in December of ‘09 I’m going to receive my Bachelor’s of Arts degree in Communication.

In 2008, I started volunteering at the Lupus Foundation and it has been such a fulfilling experience. My understanding of lupus was unclear before I started volunteering. It challenged me to learn more about lupus because I want to promote public awareness and help people understand this disease. The Lupus Foundation of America, Utah Chapter, has helped me come to the realization that I have lupus, but it is manageable, and if you keep a positive attitude and positive people around you, you can achieve anything.

Jamie Bueno, Board Member

Annette Lee, Community Outreach Coordinator

I came to the Utah Chapter of the Lupus Foundation in the fall of 2008. I had, initially, intended to volunteer on a very casual basis. I met with Noelle and we got to talking. At first I found it hard to share the experience of my daughters’ diagnosis, but after hearing about Noelle’s experience, I found that I was in very good company. As a way to help myself and my family better understand my daughters’ disease and how to live with it, I got more involved in helping with the Walk for Lupus Now 2009 event. After 5 months and great team work resulting in a successful walk, I found myself looking forward to even more opportunities to help others living with lupus. I am thankful to have the Utah Chapter of the Lupus Foundation to call my “home away from home”. There is always someone here who knows how you feel. I encourage anyone to come into the office for an afternoon of volunteer work, event planning, or just to have someone to talk to.

Trisha Schelble, Bookkeeper

I came to the Lupus Foundation to help with the bookkeeping which morphed into assisting with the annual Walk for Lupus Now 2009. I am currently the bookkeeper and grant-writer, but assist with events and other office duties as needed.

I have worked and volunteered with several non-profits throughout my adult life. This is why I was interested in coming to the foundation. I have met a few women through the years with lupus and knew a little about it, but this is as far as lupus had affected me. I knew it was a life-long diagnosis, and I knew it was not a good thing to have. Knowing as much as I do now about how devastating it is I have ,learned in the last year working at the Foundation.

Over the years I have worked as a funding coach, HR & personal secretary to the Major of the Salvation Army, been an AmeriCorps VISTA twice, in business for myself re-finishing furniture, among other things.

As an AmeriCorps VISTA I ran a reading program for M. Lynn Bennion Elementary and another program for Bringing Hope to Single Moms, assisting single mothers with many areas of their life to become self-reliant. I worked at Mt. Tabor Lutheran Church for twelve years as the administrative assistant and at First Unitarian Church as the DRE assistant..

I have volunteered with the SLCPD Domestic Violence program, Bryant Intermediate School, PTA President, JEDI Women, Families in Focus, Hansen Planetarium, to name a few.

I have sat the boards of: Salt Lake CAP Head Start, JEDI Women, and SLC Housing Advisory & Appeals Board.

I while away my hours doing yoga, walking, hiking, reading, taking misc classes from U of U, community and other places. I can watch cooking shows for hours on end, enjoy nurturing my house plants and being with my family.

I have been married for 20 years, with one recently married daughter, and three crazy cats. I have lived in SLC since 1975 with the exception of living in Minneapolis for two miserable winters. I have lived in the same house for the last 20 years!

What I do love about Salt Lake City is the geographical diversity. In one late fall day you can drive to the west desert and enjoy summer weather, then drive up over the Oquirrhs and enjoy a lovely fall view.

I look forward to working with the Lupus Foundation and am fired up about the process of growth we are in.

“To know even one life has breathed easier because you have lived. This is to have succeeded.”
~~ Ralph Waldo Emerson

Jennifer Soto-Allred, Intern

When I was a teenager, my mother was diagnosed with cancer. My mother and my family went through a lot of trials as my mom struggled to get better. She is well now but after that experience I’ve had a strong interest in understanding women’s health issues. I was introduced to LFA in February when I was helping LFA promote the Walk for Lupus Now 2009. As I promoted the event, I learned more about lupus and discovered lupus affected young girls of childbearing age. Because of my interests in women’s health issues and helping my community, I asked LFA if there was anything I could help out with—now I’m the intern.

But here is more information about me. I’m a born and raised Utahan. I’m the younger of two kids in my family. I just got married this past May and I’m enjoying my new life with my husband. I’m an undergraduate at Westminster College studying communication. I’m graduating in spring 2010 and I‘ll be applying for graduate school. With my education I hope to have a career in non-profit and be a college professor teaching health communication.

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