Lupus, Autoimmune Warriors & Supporters

**Emmely Rose Henderson**
**– Civil Litigation, Secretary, and Treasurer of MLW**

I am Emmitt’s younger Sister.
Education: University of Phoenix - Bachelor of Science in Business Marketing (2012) and MBA in Business Management (2018)
Goals and Aspirations: To start my own freelance firm offering an array of paralegal services and expertise in Civil Litigation, Intellectual Property, Family Law, and Estate Planning & Probate.
My niche market: low income, individuals with medical conditions, former inmates in rehabilitation, and victims of domestic violence and elderly abuse.
Why do I support Lupus Awareness: Spreading Lupus Awareness urges individuals to take control of their health by talking to a doctor. It provides the support to those who may feel they’re going through this difficult time alone.
Lupus is an autoimmune and chronic disease that made its way into the Henderson family in 1995. Not much was known about it until complications from Lupus almost took my brother’s life at such an early age. It was then that my family came to realization that this disease, which we thought was most prevalent in young minority women, was far from the truth. Lupus has no limitations and throughout the years we learned more about it as it began to take a toll on my brother. Others who experience or will experience Lupus symptoms and ignore it, could lead to more dangerous complications as a result of lack of knowledge, fear of seeing a doctor, or even underestimating the repercussions when Lupus is misdiagnosed. Therefore, it is important to educate and empower those who are most at-risk for developing Lupus.
Fortunately, for my brother Emmitt, raising Lupus awareness consistently has benefited him with taking control of his own health, and amazingly, has been enough to start the Male Lupus Warriors.

**Favorite Quote: The Golden Rule -Do unto others as you would have them do unto you.**

**Shanell Matlock**
**The Soldier, The**
**Warrior, The Advocate**

Shanell joined the US Army in 2002, She was a 56M, a Chaplain Assistant. She was a bodyguard for the chaplain and provided religious support and counseling to Troop members and their families.
While in the Army, she made history by becoming the very first female to become a Tabbed Honor Guard Soldier for the State of Kansas.
In 2008 she was involved in an accident that caused severe injuries. 4 years after her accident she was diagnosed with Lupus in 2011. Lupus led to her discharge from the Army.
Due to her personal journey with Lupus, she became a Lupus and Mental Health Advocate and started educating in 2022.
In 2022 Shanell along with 18 other female Veterans, became a #1 Best Selling and International Best Selling Author in the Anthology Veterans Unchained.
Today Shanell uses her experience in the military and her journey with Lupus to spread Lupus awareness.
**FB @Shanellmatlock**
**IG, @GIshane78**

**Zuriel Gibson**
**- Advocate, Actress, Coach & Non-profit CEO Thriver**

Zuriel Gibson is the eldest of five children who was born in New Orleans, Louisiana. She was often declared as the “different” one and shunned due to the vastness of her dreams. The doctors diagnosed Zuriel with Lupus and said that she wouldnʼt live past the age of twenty-four. Due to lack of knowledge and resources at the time, she immediately thought that her dreams were no longer attainable; life was over. After many bouts with depression, pain, addictions and hospital stays, Zuriel became discontent and decided to use her pain to propel her into purpose. Her passion has contributed to her success as the CEO of Blue Wings Home Health Services and more than fifteen years as an industry fashion and print model. As a lupus survivor and advocate, she has become a much sought after speaker. Her message, “There is purpose in your pain,” has been shared on numerous media outlets such as The Kingdom Broadcast Network, Destiny Channel TV, Something Good is About to Happen, The Ladies Room Radio Broadcast and more.
**Features and Accomplishments.**
Zuriel is the CEO of The Gibson Lupus ARC and Zuriel Gibson, Inc. Coined ʻLupie Chic On The Goʼ, Zuriel won her first pageant title as the 2013 Ms. United America first runner-up and has graced other runways including the Rock Star Runway. Sheʼs modeled for designers such as MiShi, Nuzri, E*Lady and All 4 U Boutique and appeared as a guest model in the video Walk Like a Model by Artist Ms. Rae. Zuriel was honored as an award recipient of the Real Housewives of Houston, featured in Houston Style Magazine with Gibson Lupus ARC, 411 Magazine, Voyage Houston, and the Real Housewives of Houston Golden Publications. Zuriel will also be featured in the new television series based in New Orleans called Jezebel.
**To inquire about Press or Interview Inquiries Contact:**
**(Coach Z)**
**Lupus Advocate/Survivor; Model; Nonprofit Executive Director**
**Email:**
**ms.zuriel@gmail.com**
**Text:**
**832-856-0341**
**Website:**
**www.zurielgibson.com**

**Dion Langley**

**– Professional Drummer | Lupus Advocate | #BeatLupus #BeatLupus Apparel CEO | CO-OWNER: THE LUPUS DREAM TEAM**
**Phone:** 757-642-4426
**Email:** drum4lupus@gmail.com
**Website:** drum4lupus.org
My name is Dion Langley. I was born and raised in Portsmouth, Va. I'm 43 years old. I was diagnosed with Systemic Lupus Erythematosus ( SLE ) in 2010. For 3 years I struggled with having it and didn’t share it with anyone: I wasn’t mentally prepared to face any of the things that we as men feel can result in our masculinity being questioned, (How did he end up with a women' disease) I didn’t want to be seen as weak or less than a man; because one of the biggest misconception about lupus is that it’s a woman’s disease. When I was finally able to open up and share with my family about having Lupus the support I received was an eye-opening experience and helped me realize that there are so many people struggling the way I was and they too could be feeling like they are alone in this fight: and so it became my purpose to share as much lupus information as I possibly could. I want to help people have a much better understanding of what lupus really is. I didn’t want to limit myself to just my community: so with some deep prayer and motivation, I decided to use something that I love, my career as a professional drummer as a nationwide avenue to promote something that I have always been passionate about. ), I immediatley established #Beatlupus organization as a place where people affected by Lupus can meet in person to provide every individual with emotional support practical advice for living with Lupus and information about treatment and management strategies. We believe that lupus is a debilitating disease. It should not be taken lightly and requires everyone’s attention.
I initially began wearing the #BeatLupus t-shirts first as motivation to myself and posting pictures on my social media pages as encouragement to all living with Lupus especially men with Lupus and instantly started receiving so much positive feedback for opening up about my challenges with Lupus. I was able to connect with so many different people from all over because being a drummer it allows me to travel various places throughout the world and I figured why not something positive with this platform and make a positive impact on others. And since I’m a drummer and I beat drums, I just came up with the slogan #BeatLupus because it really fits who I am as a drummer and lupus warrior. So I wanted to create and name that people could relate to when they see me in my merchandise. So with that in mind I then formed #BeatLupus Brand as my way of giving back to others who suffer from this deadly disease.
This past spring I released My new song "BEAT IT LIKE A DRUM"( available on all social media platforms ). This song is dedicated to the Lupus community with the understanding that we will BEAT LUPUS and while we still haven't found a cure for this chronic illnesses, I wanted to come up with a song that would help change your mindset and keep you motivated and mentally encouraged. Anyone with an auto immune disease can relate to this song and rest assure that you will win the battle no matter what.
Being a Lupus Advocate and dedicated to the overall cause, I’ve done several events in my hometown to help educate, promote and fundraise for Lupus awareness. I’m very blessed and humbled and I take this position very seriously. Before I was diagnosed with Lupus my goal was to be the best drummer in the world, but God had a different plan for me, I’m far from the best drummer in the world but I’m still blessed to be able to do what I love and it’s playing the drums. So as I always tell people “ I’M DRUMMING TO A DIFFERENT BEAT “ and that’s to BEAT LUPUS!!
**SOCIAL MEDIA HANDLES: Facebook: Dion Langley / #Beatlupus Group / Lupus Dream Team**
**Instagram: @drum4lupus/ @beatlupusapparel / @lupusdreamteam**
**Twitter: @drum4lupus**

Kelli Roseta
**– Creator, More Than Lupus**

Kelli is a lupus advocate, award-winning blogger, and author of the best-selling lupus children's book, "My Special Butterfly." She is also a 31 year old lupus survivor. After working with various lupus nonprofits for several years, she created "More Than Lupus" as an inclusive place where those who were just diagnosed, or those that have been living with lupus for decades - can connect, grow, and inspire others through the peaks and valleys of their lupus journey. Kelli lives in Portland with her husband Nick, son Luca, and dog Jax.

**Connect with her:**
**Facebook: @morethanlupus**
**Instagram: @KelliRosetaAtMoreThanLupus**
**Twitter: @LupusMore**
**LinkedIn: @KelliRoseta**
**www.morethanlupus.com**

**Autumn Austin**
**– Lupus Warrior, President of Gamma Pi Rho Inc.**
Autumn started experiencing syncope (passing out) spells in 2009, where she was hospitalized for a week trying to determine the cause and after 90 days of being poked, prodded, and having several visits to different specialists, she stopped trying to figure out what was wrong; doctor’s appointments were just draining especially when they can’t justify what is happening to you within. 3 years passed and she started experiencing other symptoms: hair loss, mouth sores, joint pains, and kidney issues; it was Christmas Eve of 2012, when her Christmas gift was an official SLE diagnosis. Since her diagnosis she has had increased organ involvement; her heart, lungs, and liver have been affected landing her in the hospital a few times over the last 9 1/2 years. In November 2014, Autumn’s position at Hooter’s Casino Hotel was eliminated and that is when she had decided to do “All Things” Lupus by starting her own Lupus based non-profit organization; that was until she was introduced to the former Executive Director of Colors of Lupus Nevada, Autumn took over the organization a year later. As the Executive Director of Colors of Lupus Nevada, Autumn strives to bring the organization to the forefront as a smaller local Lupus organization, she tries to engage more in a personal level with the Lupus Community opposed to larger organizations. The funds collected for Colors of Lupus Nevada is given right back into the Lupus community, this is a job that she doesn’t get compensated for. Autumn understands that Lupus is not a disease that is taken seriously, that people are not educated enough about the disease, and that the Lupus community in general is underserved hence the reason she along with 7 other women founded Gamma Pi Rho Lupus Sorority, Inc.; a diseased based sorority that is comprised of women throughout the United States.Autumn use both organizations, her radio voice, her position in Clinical Research, & all social media platforms that she is on as her voice to raise awareness and educate not just Nevada but the entire Lupus world. It wasn’t until Covid-19 that the world took Lupus as a life changing and ending illness and that is because the drug Hydroxychloroquine (the medicine that Lupus Warriors take daily) was being used a possible treatment for Covid-19; Autumn used her expertise in Clinical Research, her knowledge of Hydroxychloroquine, and her passion for the Lupus community to go live on Facebook to educate the world about the difference between preventive and treatment measures in Hydroxychloroquine use (she had over 4K views) on what was suppose to be a small platform.Autumn’s daily fight of living with Lupus coupled with her working a regular job, running 2 nonprofit organizations, owning an at home t-shirt business, helping her husband manage their Basketball training business, being a wife and mother to 7 kids, and being grandmother to 4 grandchildren is nothing short of amazing. Her relentless pursuit of a cure and to make the world acknowledge Lupus as a serious disease (like Cancer) makes Autumn, a “Woman of Worth”.Favorite Quote: “Show them your face but make them remember your name” ~ "Autumn Austin" immune disease through visual aids, and speak from my own experience with lupus.
**Favorite Quote: “Show them your face but make them remember your name” ~ "Autumn Austin" immune disease through visual aids, and speak from my own experience with lupus.**

**Monica Ellis**
**– Lupus Warrior, CEO/Founder Lupus Matters Corp.**

Lupus advocate diagnosed in April 2001
Monica Nakia Ellis, was born in Detroit, MI but raised in Miami, Florida. As an adult she moved to Atlanta, Georgia to pursue a career as a dental assistant. Soon after graduating dental college she was diagnosed with Discoid & Systemic Lupus at the age of 27.
Although, Lupus was a foreign word to her, Monica, made it her mission to educate herself about this disease, so that she could live a normal life while raising her 5 year old son.
Just this past December 2021 Monica, went into respiratory failure, was on a ventilator, in a coma for three days, spending fifteen days in the hospital and after being released she has been undergoing dialysis. She is very hopeful that she will not be doing dialysis in the near future. Monica, has survived Covid-19 in 2021 and is thankful & blessed to be alive.
Monica, on behalf of Lupus Matters Corporation has received and accepted many awards, the very latest ones being the Proclamation from Douglas County Mayor Rochelle Robinson this April 28th, 2022 and the Women of Triumph Award from W.O.M.A.N. this May 4th.
What makes these accomplishments really phenomenal is that they come on our milestone year. On May 10th Lupus Matters Corporation will be celebrating 5 years as a 501(c)(3). This day is also World Lupus Day, followed by Lupus Matters Day May 14th. The month of May will be full of excitement.
The mission of Monica Ellis and Lupus Matters Corporation is to promote Lupus awareness, healthy eating and movement.
**Finding a cure because LUPUS MATTERS!**
**FB:** **www.facebook.com/lupusmatters**
**IG: @LupusMattersCorporation**
**EMAIL:** **lupusmatters@gmail.com**

**MARI GONZALEZ**
**-Lupus Warrior, Support Group Facilitator**
**State: Illinois, Congressional District: IL05**
Mari has encountered: Access to Medicine, Copay Issues, Medicare / Medicaid Issues, Medical Records Access, Surprise Billing, Caregiving, Disability, Financial Assistance, Gaslighting, Invisible Illness, Medical Devices, Social Security Disability, Step-Therapy / Fail First, Transparency in Health Care
My name is Mari Gonzalez. I'm from Chicago. I'm a proud mom of a 28-year-old young woman. I'm a daughter, patient, caregiver and an advocate.
I have lived with SLE - Systemic Lupus Erythematosus, Fibromyalgia and Sjogrens Syndrome for almost 10 years. I have been also living with Raynauds's Phenomenom since 2019. Living with so many incurable illnesses is difficult. Lupus could attack any of our organs, tissue, cells, blood and causes so much pain, extreme fatigue, rashes, bruises, inflammation, insomnia, depression, irritability, sensitivity to sun and so much more.
I facilitate 3 support groups: 2 in English/1 en espanol. Even though I'm no longer able to work 2-3 jobs at once, I have made it my passion to help educate and empower others about lupus. I was alone and uneducated on these illnesses when I was diagnosed and I don't want anyone to feel the way I did.
We need better research so that people aren't waiting 5 - 6 years to be diagnosed. One way I try to bring awareness is in the month of May I dress up trees, light poles and fences with purple ribbons. Yard signs are also placed in many places with information on lupus. I sit on panels, webinars, support groups and speak with so many people that I decided to start a lupus group on social media. "Lupus Spoons" is the name on all of my socials.

MY MOTIVATION AND INSPIRATION
I am motivated by the support I get from my family. My daughter, mom and dad are always with me. I'm my mom's caregiver and she's mine. My daughter is my rock. I became so motivated to help others because I was all alone 10 years ago when I heard those words, "you know you have lupus, right?"
I do not want anyone recently diagnosed to not know what lupus is or to feel alone. I facilitate 3 support groups to try to reach out to many people. Education, empowerment, compassion and understanding of lupus is my passion.
**Email:** **lupusspoons81019@gmail.com**
**IG: lupusspoonssupportgroup**
**Twitter: lupusspoons**
**TikTok: Lupus Spoons**
**Facebook: Lupus Spoons**
**Support Groups:**
Lupus Spoons
Lupus Spoons 2.0
Las Cucharas de Lupus
**Be the change you wish to see in the world**
**Always save a spoon in your back pocket**
https://patientsrisingstories.org/story/lupus-patient-builds-support-community/
**Lupus Spoons** (currently virtually)
Formally known as Queens of Angels Parish
newly named Queen of Apostles Parish
4412 N Western Ave, Chicago, IL 60625
Lupus Spoons 2.0
Virtual Support Group
**Las Cucharas de lupus**
Grupo de apoyo sobre lupus

**Chandra Heard**
**– Gamma Pi Rho Lupus Sorority**

Shalom! My name is Chandra and I have been glamorously advocating and bringing awareness to Lupus for about 32 years. I am a Widow, Mother and a retired Nurse in the Health Care field. In 2005 I started my Masonic Journey and became a part of The Order of Eastern Star’s, that’s where my passion for walks, fundraising and charity work began. Currently I am apart of Gamma Pi Rho Lupus Sorority, where I am sisterly called “Breakin’ Newz” aka Deuce of Year of Restoration. My duties are Travel Coordinator and I assist with the Advocacy and Awareness Department. Since joining GPRLS I have become more involved with other Lupus and autoimmune organizations through my social media presence and participation. Although through the years I have battled with SLE, Chronic Kidney Disease, Fibromyalgia etc. my life is full and very rewarding. I try to be there for my friends, family and loved ones because I have never gone a day without their unconditional love and support even before I was diagnosed. Because of this strong foundation, I try to give fully of myself whenever I am asked, even when the task may be too difficult. Although being labeled disabled, I try not to present myself as such, because I am a strong warrior who’s so much more than Lupus. I’ve been told that I have a kind and outgoing spirit and most times I am a joy to be around. My hope is that I bring at least one of the missing pieces to the puzzle in our fight for Lupus and through that together we can become closer to finding a cure for this horrible disease.
B’zerat Hashem,
Wolfy!

**IG: WolfySpoon90**
**FB: WolfySpoon**
**Email: Clheard72@gmail.com**
**Email: Gammapirhotravel@gmail.com**
**Sorority: WWW.Gprsorority.com**
**Trust the Lupus FLARE process…you WILL get through to better days!**

**Lynn Gagnon**
**– The Pioneer Valley Lupus Support Group**

Lupus Advocate, diagnosed with lupus in March of 2011. Endured extreme fatigue my whole life, along with rashes, migraine headaches with aura patterns, dizziness, and nausea with vomiting. Additionally, I had frequent respiratory infections in my teen years. Doctors always gave me the same response regarding my blood labs: “You haven’t got mono. Just eat iron rich foods to boost your iron level.”
It wasn’t until 2010 when I experienced extremely sensitive skin and an unusual amount of hair loss. In months to follow, what I thought was extreme dehydration and fatigue came on very strong. Finally the joint pain kicked in beginning with the wrists, which then traveled throughout the joints everywhere else in my body. Extreme joint pain made it almost impossible to walk. Lastly, after spending time in the hospital and undergoing numerous tests by process of elimination, the hospitalist mentioned the possibility of me having a virus, or lupus.
I had never heard of lupus, so when I asked what it is I distinctly heard *autoimmune disease*. I was in denial, and it took a few months to realize I was sick, and not sure how long it would last. There wasn’t even any literature or information in the rheumatologist’s office. When I asked where to get information on lupus I was told to look up the Arthritis Foundation.
Frustrated with this experience, I knew I had my work cut out for me. I found out as much as I could about lupus, and found no local support group. I was determined to start up a lupus support group in our area, and had the help of an organization formerly called Molly’s Fund (is now Kaleidoscope Fighting Lupus). In 2015, I founded The Pioneer Valley Lupus Support Group based in West Springfield, MA. We are affiliated with Kaleidoscope Fighting Lupus based in Portland, OR.
I’ve made it my mission to try and educate myself and the public about lupus and overlapping diseases by distributing literature with a lupus art display, writing articles for the local paper, talking on the local radio station, and march on Capitol Hill to ask for continued funding for lupus research. I also participate in the local high school and college health fairs by informing students about lupus, and overlapping autoimmune disease through visual aids, and speak from my own experience with lupus.
Facebook Page: The Pioneer Valley Lupus Support Group: https://www.facebook.com/beatthewolf15 Email: lupus.springfieldma@gmail.com
Phone: (413) 265 – 8942 (may call or text)

**Kimberly Howse**
**- Certified Personal Trainer / Online Coach**

I was diagnosed with systemic lupus in December of 2005. I lived with this disease that I knew nothing about and because of my unfamiliarity with it became very ill.
I ended up in the hospital, lost most of my hair, an healthy amount of weight, and hope and confidence for life altogether.
Along with systemic lupus, I developed pericarditis, vasculitis, raynaud's syndrome, anemia, fibromyalgia, pleurisy, hashimotos, and was even declared mentally unstable😖
There seemed to be no hope left for me, however by the Grace of God, with lots of prayer, positive motivation, love and support, I pulled through the darkest hole of my life!
I don't share this for pity or sympathy AT ALL, I share in hopes to help someone else going through a lot of the pain and hopelessness that I went through because of the lack of awareness and support of lupus.
As you see, I now live a healthier and more active lifestyle due to my research, learning, connections made and experiences living with lupus.
It has become my passion to see others live a healthy, happy life and therefore have created this fitness biz @howsefitnessandnutrition
If you are interested in changing your habits and getting back on track with living a healthier life with someone that actually knows the real life experiences we have with lupus, I encourage you to reach out for a free consult. Let's discuss more about how I can share how my journey has transformed my life.

Follow *Kimberly Howse*
**@howsefitnessandnutrition**
**on FB & IG**

**Felicia Cassandra Stewart**
**- Make up Artist / Lupus Supporter**

Hi my name is Felicia Cassandra, after being a makeup artist for 12 years and encountering several butterfly rashes , I began to specialize in lupus skin and makeup applications. I formulated Butterfly Nectar, the first skincare in the industry inspired by the butterfly rash and and a movement to bring the beauty store straight to home for woman suffering with lupus. We now have butterfly resources through lupus glitter and out butterfly booth at the conventions to help woman and educate on lupus across the globe and create butterfly beauty advisor jobs through the lupus community.
**Join us at @Lupusglitter for more butterfly moves on FB,IG & TIKTOK**

**Breann Carroll**

**- Founder/President The Middle Bee Foundation NPO**

The Middle Bee Foundation for Lupus is a nonprofit organization incorporated in Chicago, IL founded by Breann Carroll. In 2018, she decided to start a group to support individuals with lupus. Since then, she has organized a lupus walk every year in May with support from her family and friends. Seeing a need for more contributions within the Illinois lupus community, she officially formed a nonprofit in 2021 to advocate for the people she loves and to also help spread awareness about lupus disease. We now offer financial assistance, group fitness classes, and educational information about lupus. We envision a life with ease for all people affected by lupus through support, education, and advocacy services. It is our hope to END LUPUS FOREVER.
**There's much to see on our website at** **themiddlebeefoundation.org** **and feel free to join our Facebook support group "Bees 4 Lupus".**

**Shamekka Marty**
**– Pretty Sick Lupus Chic**
**IT PM, Motivational Speaker, Career Counselor, Author and Manage my own podcast.**

My name is Shamekka Marty! I'm 42 years old, married and with 3 beautiful kids 24, 21 ,14. I'm originally from NJ but moved to California 6 years ago. I was diagnosed with Lupus SLE which is now Lupus Nephritis back in 2010. My mother has Lupus as well and passed away due to complications from it at age 44. I'm on the kidney transplant list and have several overlapping autoimmune diseases. My mission is to show that even though I have so many diseases I still manage to work.
**Lupus does not have me!**
**FB @shamekkamarty**
**@prettysicklupuschic**
**IG @prettysicklupuschic**
**TW @prettysicklupuschic**
**TikTok @prettysicklupuschic**
**Website:** **prettysicklupuschic.com**
**Email:** **prettysicklupuschic@gmail.com**

Kristal Kent

– Founder of The Fibromyalgia Pain Chronicles, Founder of Veteran Voices for Fibromyalgia

Kristal Kent is a disabled Army Veteran living with Fibromyalgia and served with the 256th Combat Support Hospital. After being medically discharged due to injuries, Kristal stayed on with her unit and volunteered for 2/12 years as the Family Readiness Group Leader, re-invigorating the program to become a supportive extension of the unit for the soldiers and their families. During her time as the FRG Leader, Kristal upstarted a Food Pantry to assist the Unit’s service members struggling with food sustenance, coordinated a resource list of federal, state, and local support and assistance resource programs for soldiers and families, along with hosted “Readiness” educational weekend to ensure soldiers and Military Families were prepared for deployment. Kristal’s Volunteerism as FRG Leader was officially recognized with a Commendation from the U.S. Department of the Army. Kristal also worked in Social Services for over 20 years in a variety of roles, from Adult Advocacy Coordinator, Care Coordinator, Assertive Community Treatment Specialist, Benefits Coordinator and Supported Employment Services, assisting individuals with Intellectual Disabilities, Mental Health Conditions and Veterans alike.

As a Veteran living with Fibromyalgia, Kristal identified the lack of supports, healthcare options and education for those living with Fibromyalgia, especially Veterans. To address the gap in healthcare and community supports, Kristal founded the initiatives, “The Fibromyalgia Pain Chronicles” and “Veteran Voices For Fibromyalgia,” to address the inequities in healthcare, Kristal engages in VA Policy Advocacy, Legislative Advocacy and Systems Advocacy to emote positive change for those living with Fibromyalgia. Kristal also provides support, educational resources, and advocates on behalf of those living with various Chronic Pain Conditions, Rare Diseases, PTSD and Traumatic Brain Injury (TBI).

Kristal’s Advocacy work on behalf of the Veteran and Fibromyalgia Communities has been recognized by several organizations such as WEGO Health in which she received the Patient Leader Hero Award and the Best In Show on Facebook in 2018, the 2019 Fibro Warrior Award from the Fibromyalgia Care Society of America, the Warrior of the Week in 2020 from UK Fibromyalgia, and in May 2021 Kristal was presented with a Commendation from the State of Ohio House of Representatives for her advocacy work through Veteran Voices For Fibromyalgia.

Kristal previously served 3 years as a Board of Trustee for the Fibromyalgia Care Society of America, previously served as a Board Member on the WEGO Health Patient Advisory Board and volunteered for the Cleveland Clinic’s Patient Panel. Kristal is currently a member of Society For Participatory Medicine, WEGO Health’s Patient Leader Network, a Co-Op member of Savvy Cooperative and the American Legion.

WEBSITE: Veteran Voices For Fibromyalgia

Home | My Site (veteranvoicesforfibromyalgia.com)

FACEBOOK: The Fibromyalgia Pain Chronicles:

https://www.facebook.com/FibroPainChronicles

FACEBOOK: Veteran Voices For Fibromyalgia:

https://www.facebook.com/VeteranVoices4Fibro

INSTAGRAM: Kristal @ The Fibromyalgia Pain Chronicles:

http://www.instagram.com/thefibropainchronicles

YOUTUBE: The Fibromyalgia Pain Chronicles TM:

The Fibromyalgia Pain Chronicles TM - YouTube

**Estela & Juana Mata**
**-Fibromyalgia and Lupus Warrior, Founders of Looms for Lupus**

Looms for Lupus is a non-profit corporation providing resources and awareness to minority families and those affected by Lupus, Fibromyalgia and other overlapping illnesses. Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources for overall physical and mental health. Our aim is to create an environment to reassert a sense of hope during their time of illness and to empower the individual to take charge of their life through a chronic and often life threatening illness.
**www.looms4lupus.org**
**Instagram:** **Looms for Lupus (@looms4lupus) • Instagram photos and videos**
**Facebook:** **(3) Looms4Lupus | Facebook**
**Twitter:** **(1) Looms4Lupus (@Looms4Lupus) / Twitter**
**Linked in:**

**Tonya Michelle Johnson**

**- Ms Lupus International 21-22, Owner of Cookies by Ms Tonya, QueenTee’s Juices**
I am a lupus advocate. I have had lupus since the age 9. I’ve lost a kidney due to Lupus. I live with Fibromyalgia, Rheumatoid Arthritis, and Lupus. I will not be silent when it comes to my diseases. I’m passionate when it comes to Lupus.
**Social Media:**
**Facebook: Ms Lupus International 2021-22**
**TikTok: mz_c300**
**Facebook business page: Cookies by Ms Tonya**
**IG: mz_tonyac300**

**Dr. April Moreno**
**- PhD MPA**

Dr. April Moreno is the Founder and CEO of the Autoimmune Community Institute, a nonprofit dedicated to health equity and community based support. She has a PhD in public health and information systems technology and is also the founder of the Public Health Podcast and Media Network and lives in Southern California with her husband and two giant schnauzers. April was diagnosed in 2016 with autoimmune disease and started the Sisterhood of Limitless Living podcast to support diverse women with autoimmune living.
**Please reach out if you are interested in:**
Joining our autoimmune support group
Participating in social/behavioral/public health (non-clinical trials) research and learning how to research
Sharing your story on our ACI Blog
Be Interviewed for our upcoming podcast
Also reach out if you are interested in learning how to podcast to share important health information and support.
*Support Autoimmune Health Equity:*
The Autoimmune Community Institute is dedicated to autoimmune health equity in community based research, advocacy ,and support.
**Email:** **april@acicommunity.org**
**Websites:** **acicommunity.org** , **publichealthpodcasters.com** **, and** **sl3podcast.com**
**Instagram: @autoimmunecommunityinstitute and @publichealthpodcasters**
**Twitter: @acicommunity and @phpodcasters @sl3limitless**
**acicommunity.org**

**Shakita Jones**

Shakita Jones, who lives with Lupus and Mental illness has made Lupus Awareness her passion and mission in life. She established herself as an advocate in 2014 while finding the silver lining in being diagnosed with both illnesses. The situation’s that arise are admirable, the emotional strain that comes with them , though can be difficult. For Jones, her Lupus diagnosis could have broken her while there has been and continues to be very difficult moments. Jones leans on her faith, self-love to find joy in her life. She is a Pillar in her community and lives to educate others on the disease that is more common than people think in our community.
Prior to being diagnosed with Lupus, Jones was initially diagnosed with depression which is really common in people with Lupus. Lupus is a systemic autoimmune disease in which the body’s own immune system mistakenly attacks the body’s healthy tissue. The course of the Lupus is unpredictable, with periods of illness (flare ups) alternating with remissions. A large percentage of sufferers are of African American descent. Lupus mostly affects women in child bearing years’ ages 14-44. It is worthy to note that 90% of suffers are women and 10% men. In Jones’s case Lupus has affected several family members. Hitting home the most her Aunt passed from Lupus. For this reason and countless others Jones has been on a mission to advocate not just for her behalf but others as well.
She is adamant about educating people on this disease called Lupus. She will tell you that everyone should know about this disease, doctors especially because the symptoms are so close to other Autoimmune diseases, they miss-diagnose patients and don’t put all the symptoms together. This was the case for Jones, who suffered for close to 20 years before being diagnosed with Lupus. Since Lupus can mimic other diseases on several occasions, Jones was misdiagnosed. By the time the Doctor’s were sure of her diagnosis the disease attacked her skin causing lesions and leaving behind scars.
Jones refused to recluse ,she decided she had no choice but to remain strong; as if it was her God given duty. Although she has gone through many trials and dealt with errors with Lupus and the health care community she is still resilient and is usually seen with a glowing spirit full of perseverance.
She truly inspires and educate as many people as her message can reach through advocating . Social media has become a great platform for her to reach a majority of her audiences. She is constantly doing interviews and making videos about her life as she lives with Lupus. Her future endeavors continue to help her reach more people using different global platforms and to ultimately speak on TEDtalk.

**TAMIKA MARSHALL**
**Versatile Woman by Tamika**
Lupus Warrior diagnosed in 2009, endured two heart attacks, two strokes, 13 surgeries, cervical cancer, countless hospitalizations and three ICU moments.

Tamika has also been an asset in volunteering for medical trials in hopes to find a cure for lupus or at least a medication to eliminate flairs as much as possible.

Her hard work and dedication never goes unnoticed. Tamika is one of the Great Eight Founder's of Gamma Pi Rho Lupus Sorority, Inc. An organization of women age 18 & over who have some diagnosed form of Lupus. Gamma Pi Rho Lupus Sorority, Inc. works towards educating, advocating and empowering not only the Lupus community, but, the World.

She is also the Director of Patient Advocacy and Executive Assistant to Dr. Jeffrey Thompkins at JET Foundation. An organization in Las Vegas, NV with over 37 community resources at its fingertips.

As if that seems enough, we are just scratching the surface. Tamika is owner/operator of Versatile Woman by Tamika. A one stop location for needs catered to
"Making Your Life Easier."

Certified Event Management Planner
Vegan Skin Care Products
Organic Crystal Candles
Relaxation Gift Baskets and
Massage Therapy

**You can find her at** **www.versatiletamika.com** **(coming May 2022) as well as her social media links:**

**Socal Media**
**FB @versatilebytamika**
**FB @eventsbyversatiletamika**
**IG @versatiletamika**
**TW @versatile_hands**
**TT @versatiletamika**

**Email:**
**VersatileTamika@gmail.com**

"IN A WORLD OF SEVEN BILLION PEOPLE, YOU ARE BEAUTIFUL AND UNIQUE. NEVER LET ANYONE TELL YOU DIFFERENTLY."

Jade Nealious

- Crowning Lupus

My name is Jade Nealious! I would describe myself as a free-spirited, unapologetic lupus advocate who’s determined to not allow my circumstances dictate my life. Not to mention, I’m a corporate educator and assessor, nonprofit founder & executive director, cheerleading enthusiast, lupus warrior, lupus patient leader, and lover of all things that are bright and light.

I was diagnosed with lupus and rheumatoid arthritis my junior year (2004) in high school during my competitive cheerleading years. Despite numerous hospitalizations, I went on to graduate with my bachelor’s degree in Mass Communications from the University of South Carolina – Go GAMECOCKS! And I recently graduated with a Master of Science degree in Management and Leadership from Southern Wesleyan University.

Over the years, I was determined to not only illustrate that there was so much more to me, than lupus. Although I felt my actions portrayed that, I knew I could do more. In 2013, I started a campaign to raise lupus awareness. But that still was not enough for me. In 2014, I turned that campaign into a nonprofit organization, Crowning Lupus, and have been helping lupus patients ever since. My nonprofit serves lupus patients throughout the state of South Carolina and the Central Savannah Regional Areas of Georgia (CSRA). We also service patients who battle Fibromyalgia, Crohn’s, Rheumatoid Arthritis, and other sister diseases to lupus under our many different programs. The mission of Crowning Lupus is to ensure that men and women living with lupus, immune deficiency disorders, and/or rheumatoid arthritis avoid health differences in access to or availability of medical facilities and services between populations defined by age, ethnicity, economic resources, and/or gender through education, financial access, and advocacy. We aim to lift the financial and mental burden off of families battling lupus, rheumatoid arthritis, and any other chronic illness.

Fun Fact: My family and friends actually threw me a surprise prom in the hospital my senior year in high school because I was admitted the night before senior prom. Talk about beautiful memories 😊.

My motto and favorite quote: Run Lupus ... Don't Let It Run You!

Social Media

Facebook: Jade Nealious

Facebook Group Page: www.facebook.com/CrowningLupus

Instagram: @Crowning Lupus

Twitter: @CrowningLupus

YouTube: Crowning Lupus

Pamela Coombs Delis
**- PhD, RN, CNE, Lupus Ambassador, Northeast Region, Lupus Foundation of America**
Despite having SLE, Sjogren’s, Raynaud’s, depression, anxiety, microscopic lymphocytic colitis, chronic bursitis, migraines, a history of endometriosis, and other issues, I was able to have a long career as an RN. I worked as a staff nurse, in leadership positions, and finally earned a PhD in Nursing. With my doctoral degree, I taught the next generation of nurses at Salem State University and at Mass General Hospital Institute of Health Professions. Losing my career was one of the most difficult experiences I have ever experienced, as I was raised with a strong, New England work ethic. I had to re-evaluate my abilities and re-think my worth. Although I am no longer able to work, I advocate for those with lupus, chronic pain and illness through writing. I have authored/co-authored multiple articles for the healthcare community and presented at both regional and international conferences. I believe that through education the healthcare community gains understanding of the many challenges that Lupus Warriors face.
My own path with chronic illness started when I was a teenager, but it took many years of mis-diagnosis before I was finally told I have SLE at age 37. I am very fortunate to have loving support from my husband, who never stopped believing in me. My son grew up with a chronically ill Mom, and now he is a physician who understands the human side of SLE.
Although SLE has challenged me in more ways than I ever could have anticipated, I am determined to continue to live my life and to make the world a better place for those with SLE and other autoimmune conditions.
Publications
**Delis, P.** (2014). Resilience, in Maheady, D. (Ed.) *The Exceptional Nurse: Tales from the trenches of truly resilient nurses working with disabilities.* Editor.
**Delis, P.** (2014). Sick and Tired of Being Sick and Tired, in Maheady, D. (Ed.) *The Exceptional Nurse: Tales from the trenches of truly resilient nurses working with disabilities.* Editor.
**Delis, P. C.** (2019, Jan/Feb). Uncertainty and quality of life in systemic lupus erythematosus: A cross-sectional study. *Rehabilitation Nursing,44*(1), 2-10. doi: 10.1097/rnj.
**Delis, P. C.** & Dowling, J. (2020). An integrative review of the LupusQoL© Measure. *Journal of Nursing Measurement.* doi: 10.1891/JMN-D-18-00083
**Delis, P. C.** (2020, Sep). Lupus in a time of uncertainty. *Massachusetts Report on Nursing,* 8.
**Delis, P. C., Henderson III, E., and Langley, D.** (2021, May). Perspectives on Male Lupus: “Lives turned upside down.” *Massachusetts Report on Nursing,* 12.
**Delis, P. C. & Delis, Z.** (2021, Nov). Medical cannabis and chronic pain: Information for nurses. *Massachusetts Report on Nursing,* 14.
**Delis, P. C. & Henderson III, E.** (in print). Chronic pain experiences in Lupus: Implications for healthcare. *Massachusetts Report on Nursing.*
pamela@lupusnurse.net
**My new definition of success:**
**“Living a life of gratitude, contentment, and loving-kindness.”**
**FaceBook: Pamela Coombs Delis**
**Instagram: lupusqol**

**Christy Scott**

**- President of F.A.L FIGHTERS AGAINST LUPUS**

My name is Christy Scott., I am 45 years old and have been battling Lupus for 28 years. I was diagnosed with Systemic Lupus Erythematasus (SLE) in 1994 at the age of 17, a month before my brother was killed in a car accident. After getting sick once, I was in denial because I wasn't educated on anything about Lupus. I grew up in a small town called Jacksonville, Texas, were back then no one has really ever heard of Lupus. Lupus started taking a toll on me in 2000, from being in the hospital couple times a year, having surgeries every year, fingers and toes forming crooked, loosing my mobility to walk at times, and loosing my eye site.

My passion has always been helping others. In 2013, My CEO and I came up with a Lupus Group called F.A.L FIGHTERS AGAINST LUPUS. What I do is, encourage others all over the world and I send out GET WELL CARDS, when someone is hospitalized and I help out other Organizations.

Favorite Quote: I'm not going down without a fight." I'M A FIGHTER AGAINST LUPUS FOR LIFE ".

Phone: 903-721-3776

Email:**christyscott125@gmail.com**

Social Media: Facebook Christy Scott

F.A.L FIGHTERS AGAINST LUPUS

Rosadela Durruthy

- Shes Got Lupus Company

Lupus and Mental Health Advocate diagnosed with Lupus SLE at the age of 23 in 2007. Throughout my journey I have additionally been diagnosed with hyperthyroidism, asthma, diminished lung capacity, neuropathy, Raynaud’s disease, anemia, high blood pressure, insomnia, and arthritis. I have undergone a kidney biopsy, surgery to remove half my thyroid, chemo therapy treatments, nerve testing, and yearly lung function tests. I have had an invasive right heart cath procedure done that resulted in me getting a blood clot near my lungs. I have had pneumonia and shingles multiple times. I have experienced hair loss, tooth decay, skin rashes, skin ulcers on multiple body parts, multiple hospitalizations, depression, and muscle loss that resulted in me being wheelchair bound for a number of weeks. I have been told by doctors that my body is shutting down and yet still by the grace of God I am here to raise my three children. Everyday we push through the pain to live a semi-normal life so in 2022 I began the podcast Through the Pain and received my life coaching certification with the goal to empower our listeners by hearing others struggles and triumphs with their own chronic illness. You can listen to the podcast and schedule a free 15 min consult call with me by going on my website.

shesgotlupus.com

*I have merchandise https://shesgotlupus.creator-spring.com/?

Socal MediaFB/IG/Twitter/TikTok @shesgotlupus

Email:shesgotlupus@gmail.com

My favorite phrase is “She’s got lupus, lupus does not have her”.