annual event attendance: 20k
facebook support chats: 4 per week
social followers: 46k
established in: 2007
Fact: 90% money raised goes towards supporting lupus survivors
Kelli Roseta has been a lupus warrior for more than two thirds of her life. Diagnosed with systemic lupus erythematosus (SLE) at just 11 years old, she spent much of her childhood in a hospital bed.
In the 25 years since her diagnosis the disease has attacked Kelli’s joints, connective tissue, kidneys, lungs and nervous system, but she refuses to let it impact her positive outlook.
Committed to helping other lupus patients “discover their new normal,” Kelli now works as Client Services Coordinator for Molly’s Fund Fighting Lupus. The nonprofit was created by lupus patient Molly McCabe, who was an up-and-coming opera star when she fell ill in 2005.
“[Molly] felt everything on the internet was cold and clinical, there was no place to go to connect with others in the lupus community,” Kelli says. “There was so little advocacy, so little awareness.”
As a 25-year lupus survivor, I know firsthand how challenging navigating this illness can be. I have a passion for helping people discover their “new normal”. That passion is driven by many years of living with this illness, and to be honest, too many early years of letting lupus steal my joy. I don't want lupus to steal people’s joy, it doesn't deserve to do that.
My number one priority is to make those in the lupus community know that they are not alone.
So, in 2007 Molly and her mother formed Molly’s Fund Fighting Lupus, aiming to educate both the public and the medical community.
“It took me a year to recover from my initial infections and to adjust to the loss of the career I had dreamed of for so long,” Molly writes on the Molly’s Fund Fighting Lupus website.
“But now, I understand that my calling is to educate people about lupus and to make more people aware of what it is and how it changes lives forever.
“I will also work to spur the medical community to recognize lupus and its symptoms and to put more time and resources into reaching early diagnoses and into ultimately finding a cure.”
I had to stop looking to the past, feeling sorry for myself, and thinking that I was the only one suffering in life.
In her role at Molly’s Fund Fighting Lupus, Kelli’s focus is “connecting lupus survivors with the support they need.”
She helps others navigating life with lupus to find information and support groups, as well as medical and financial resources. And sometimes she helps by simply talking to them on the phone.
“My number one priority is to let those in the lupus community know that they are not alone,” she says.
Each week Kelli leads several support chats on Facebook and helps facilitate an in-person support group. She also manages the organization’s email and social media correspondence and is the primary contributor to the Molly’s Fund Fighting Lupus blog.
Partnering with websites and communities like NewLifeOutlook is important to helping further Molly’s Fund’s mission of spreading lupus awareness and encouraging research, Kelli says.
“[It’s] not only important, but truly meaningful to the lupus community.”
Each week Kelli leads several support chats on Facebook and helps facilitate an in-person support group.
Kelli says her passion for this advocate role stems from her personal experiences with the disease and a desire to empower others to maintain their sense of joy, despite awful circumstances.
“I know firsthand how challenging navigating this illness can be. It can affect you physically, emotionally and financially. It can affect your job, your family, and the way you proceed with your life goals and passions.
I have had lupus since I was 11 years old. I contracted Epstein-Barr virus, which turned into mono, which caused an autoimmune response causing systemic lupus erythematosus. After I got sick, I was hospitalized for six weeks. That hospitalization led to dozens more in my pre-adolescence and into my young adulthood.
“I want people to know that just because they have been diagnosed with lupus, it doesn’t mean their life is over.”
I want people to know that just because they have been diagnosed with lupus, it doesn't mean their life is over.
She says she spent “too many” years letting lupus steal her own joy, and had to learn that her value wasn’t dependent on her health or accomplishments.
“I had to stop looking to the past, feeling sorry for myself, and thinking that I was the only one suffering in life. Because everyone has his or her lupus. Everyone is fighting a battle; we are all survivors in one form or another.
“Once it clicked that I could use my experience, my pain, to help others, that is when my joy bucket started to overflow.”
There are many ways to get involved with Molly’s Fund Fighting Lupus.
If you’re in the Portland/Southwest Washington area, attend an event — Molly’s Fund Fighting Lupus holds two major fundraising events in the area each year, the Serving Up Style campaign and the Butterfly Walk.
Molly’s Fund Fighting Lupus is always looking for volunteers, and always grateful for donations, which are directed toward awareness, education, advocacy, support and their primary goal, an eventual cure.
When you have a chronic illness, feeling like you’re part of a community and knowing that you’re not alone in your day-to-day struggles is important.
Some voices in this community stand out as pillars of strength, always there to listen and offer words of understanding and encouragement. Their realistic but positive outlook has a way of empowering others.
NewLifeOutlook’s Community Voices project is our way of recognizing these people — and we need your help to do it.
If there’s a blogger, a tweeter, a YouTuber, a Facebook group creator or a forum moderator who inspires you to persevere in the face of chronic pain, fatigue and brain fog, we want to know about it — nominate them by contacting firstname.lastname@example.org
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