The LFA is leading efforts to find the cure for lupus and help people who are affected by the disease.
About Us - Utah Chapter
About the Lupus Foundation of America, Inc.
The Lupus Foundation of America, Utah Chapter is part of a national force devoted to solving the cruel mystery of lupus while providing caring support to those who suffer from its brutal impact.
With the help of informed volunteers, lupus medical experts, and committed and caring supporters, we:
support research and conduct education programs so everyone affected by lupus can have an improved quality of life;
provide information to ensure people with lupus and their families get answers and health professionals know about new means to diagnose and manage the disease; and,
conduct activities to increase awareness of lupus, rally public support for those who are affected by lupus, and advocate on their behalf
Help Us Solve The Cruel Mystery!
If you join the fight, we will not have to concede victory to this terrible disease. With your support and involvement, we will be able to solve the cruel mystery of lupus in our lifetime and end its devastating impact on millions of lives.
Lupus is a complex disease that requires a comprehensive strategy. Our programs and services all have a common purpose: To improve the quality of life for all people affected by lupus.
We raise money to support research through the Lupus Foundation of America’s National Research program, Bringing Down the Barriers™, which aggressively pursues an agenda to find answers to the most difficult questions and advance the science and medicine of lupus. Our national research program has a unique three-pronged strategy: lead special initiatives, fund researchers, and advocate for expanded investment.
Education & Support Services
We answer questions about lupus, provide tools, resources, and referrals to doctors who treat lupus, and help guide individuals and families through the complexities of living with lupus and toward a better quality of life.
We always look forward to hearing from you!
Lupus Foundation of America, Utah Chapter, Inc.
352 S. Denver Street #101
Salt Lake City, UT 84111
ABOUT US - YOUR UTAH CHAPTER BOARD, STAFF & OUR STORIES
Noelle Reymond, President & CEO
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 into 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.
Annette Lee, Development Director
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.
Katie Fillnow, Community Outreach Coordinator
I was born and raised in Maine, enjoying a childhood on the beach and in the woods. I moved to Salt Lake City in 2002 to attend the University of Utah where I graduated with my bachelors degree in Therapeutic Recreation. It was during my college years that I fell in love with skiing and my husband Nate. When I am not at the lupus foundation I work at a group home for people with disabilities or I am up skiing Alta or Snowbird. I have a dog, Bailey and a cat, Cirque. I enjoy hanging out with friends and family, crafting, backpacking and having fun.
I have been involved with the LFA, Utah Chapter since autumn 2007. I joined the board and served as secretary for my first year. I then served as president of the board for two years. With the growth of our foundation there was a need for more office staff so in the summer of 2009 I started working part time as the community outreach coordinator.
I am currently involved with grant writing, our two yearly fundraisers, the Walk for Lupus Now and the Papillon Gala and community outreach.
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.
It is my goal to continue to help support the growth of our foundation, to serve more people and raise money to find new treatments and a cure for lupus.
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
Tabitha Thompson, Board Chair
There were a handful of years when only my immediate family knew I had been diagnosed with lupus. I just didn’t want people to treat me differently. I didn’t want every conversation to start with the earnest yet pity-filled “How ARE you?” when people look deeply into your eyes to show their concern, instead of a normally flippant “Hey, how are ya?” that doesn’t require a meaningful answer.
Besides, personally, I was elated, in a weird way, to have the diagnosis. It meant I wasn’t crazy or lazy or a hypochondriac. It meant there was a reason that I felt crappy and too tired to move and got sick so easily all the time. And it meant that there was something I could do to treat it.
It’s not that receiving support and love from extended family members wasn’t important to me; it’s just that I didn’t want lupus to be the main topic of every conversation I had with every person I met up with that hadn’t seen me for more than a week.
Everything changed, though, when my mom saw a billboard announcing the Walk for Lupus.
I sat down with the phone and called every family member and close friend I had. Suddenly, having to say, “So, a few years ago I was diagnosed with lupus ...” didn’t have to be followed by their earnest yet pity-filled response. I got to go on. “… and the Lupus Foundation is having a fundraising walk and I’d like to invite you to walk with me.”
Suddenly, telling about my lupus was empowering. There was a point to it. People didn’t just have to wail in despair for my health, they could show up and support me.
And, I think, hearing the diagnosis in connection to the Walk for Lupus was empowering for them, too. Let’s be honest, what do you say when someone you love is given a rough health diagnosis that you probably don’t understand? But to be invited to walk for them was easier to respond to, an easier answer to give: I am here for you. I’ll walk with you.
People came, fundraised, and also learned about the disease all the while feeling the power that comes from doing something to help.
That was more than a decade ago now, but I still love what the Walk for Lupus does. I still meet new people every year, some reeling from a new diagnosis, yet shored up by the camaraderie they find at the walk. They look around and feel the love and support of the hundreds around them, knowing they and their families aren’t alone in their fight and in their desire to help, and empowered by the knowledge that they can do more for their loved one than simply ask, “How ARE you?” Even if, just once a year, they walk around the park with them.
Feli Anne Hipol, Board Vice Chair
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 and resilient woman. I received my B.A. in Communications-'09 and my MPH(Master in Public Health)-'12. I plan on working in the public health field for a couple years, then go back for my doctorate degree.
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.
Amy Nicholson, Board Member
I live in Riverton Utah. I have been married to the love of my life, Greg, for 14 years and with the gift of adoption we have 3 amazing children. Zander, 11, BrinLee, 8 and Gabriel, 5. I’m currently a stay at home mom and I love it. I’m a room mom to my kids and serve on our school PTO and school board at Southland Elementary. I was a certified nurse assistant but haven’t done that for years. I also worked as a docent at the Utah Hogle Zoo, as a Secretary, as an assistant manager in retail, and also enjoyed my time as a Salt Lake County Referee. I attended Salt Lake Community College after Graduating from high school in 1992. I have served on the Riverton City Youth City Council, the Utah Disabilities Board and on the Utah Adoption board over the years.
I truly enjoy my Family time and it always comes first in my life. I enjoy camping, hiking, skiing, scuba diving, running, biking and almost all sports. I love doing crafts and scrap booking. I love to read and I have been trying to write a book for years. I enjoy taking pictures and traveling the world. I love all and any adventures!
In January of 1987, at the age of 12, I was diagnosed with Lupus. At that time it was an illness that affected mostly older people so right from the start I threw my Doctors for a loop! This was to be an advantage because it was interesting to my doctors. Over the years the Lupus has aggressively attacked my skin with vasculitus, the butterfly rash and bullas Lupus. It has affected my joints, my finger nails and finger tips, Reynard’s, kidneys, heart and lungs, blood with anemia, hair loss and fatigue.
My Dad got involved and worked with the Lupus Foundation for years. During that time I attended and participated in many different things associated with people in our community who battle this hard disease. I also have been able to work with my Doctors at the U of U in helping people who are newly diagnosed to better understand this illness. This has been a priceless and touching experience for me. I have had lupus for 25 years and I will soon be 38 years old and I feel grateful as each year passes. I have had many ups and downs since the time I was diagnosed with lupus. Many of those years I struggled to even stay alive. I have been blessed with GREAT Doctors and an amazing family support system. They have always been my cheerleaders and helped me through many of my battles with this difficult disease. I have been on a healthier side of Lupus for 4 years now; I have never been in remission, but I hope to get there soon!!!
The thing that has motivated me to keep going is the joy of my Family and life. I truly believe setting goals even if it seems totally impossible to reach at the time and it has helped me to get where I’m today. I look back at my lists and realize that each goal has a different stepping stone in my life and has in one way or another made me become a stronger, happier person. For me it has been baby steps from getting out of the hospital, being able to walk, going to a dance (and dancing), graduating from high school, going to college, getting married, being a mom and even running a half marathon race. All of these things have taken years for me to accomplish, but I can say, “I DID IT!” Sometimes I do find my self getting impatient and even frustrated because I want to go faster and harder, then I remember where I was not very long ago in a wheel chair, very sick and knocking on heavens doors. The reflection is an emotional reminder that life is precious and it is what you make of it.
I look forward to serving on the Utah Lupus Foundation board with amazing people who make a difference in our community. I’m excited to continue to meet new people and to join the Lupus battalion in this fight to help others manage this frustrating and difficult illness.
Wes Dodd, Board Member
Victoria Loveless, Board Secretary
I found the Lupus Foundation of America, Utah Chapter in 2011 during my junior year of college. I was looking for ways to become more involved with the community and decided to start where my heart could empathize-- lupus.
My initial introduction with lupus was my sophomore year of High School. This was a fairly painful time, both physically and mentally. As a fifteen-year-old teenager, I was diagnosed with rheumatoid arthritis and tested repeatedly for lupus. I remember feeling a large amount of frustration, as my peers were able to excel in all of the things I longed so much to do and I was constantly in a doctor's office awaiting another round of testing. No one in high school wants to be treated differently, and I tried desperately to hide the limping, pain and depression that so often accompanies this cruel and mysterious disease. So many times in my teenage years and early twenties I wondered, "Why this was happening to me?" It wasn't until I finally accepted my situation that I could start turning lupus into a strength, rather than the looming struggle it had always been.
That is when I decided I wanted to volunteer for the Lupus Foundation here in Utah. Since then, a lot of my strength has been found through the hearts of those at the Lupus Foundation. From the very first day as a volunteer, I felt a sense of normalcy. A group of real people who had experienced all the things that I could never quite understand myself actually existed and I felt an instant connection with them. Being a part of such an amazing organization has helped me see the bigger picture, it has given me the chance feel optimistic in a world that has been and could easily still be filled with self-pity.
As time has progressed, members of the foundation and the people who support it are dearest to me-- heroic even. I feel a sense of admiration that is hard to explain and easiest to feel when I am around them. While lupus will always be a struggle in my life, finding those who I can confide in helps lighten the burden that accompanies it. I would encourage anyone who has been affected by lupus or would like to become involved with this amazing group, to come in or participate in one of one of our events. I wish I would have found them so much earlier in my life.