Did you know that March is Autoimmune Disease Awareness Month?
The Teen Magazine had the amazing opportunity to interview the Lupus Foundation America, which has been pioneering the fight against lupus disease for the last 40 years and counting.
From everything about what lupus disease is, the mission, and how you can get involved as a teenager, we're here to share some important words and spark awareness.
Introduction To Lupus Disease
What exactly is lupus disease?
Lupus is an incurable, chronic autoimmune disease in which your immune system that is meant to fight against infections, begins to attack healthy cells and tissues in your body.
It can affect any organ system (ex., skin, lungs, kidneys, brain, and heart) and causes symptoms that can range from extreme fatigue, debilitating joint pain and rashes to heart attack or stroke.
Anyone can develop lupus, but it is commonly found in women between the ages of 15-45, and two to three times more likely to develop in women of color.
The Creation of Lupus Foundation of America
How did the Lupus Foundation of America come to be created?
The Lupus Foundation of America was founded in 1977, when leaders in the lupus community across the nation recognized the need to elevate the disease to the forefront of the nation's health care agenda.
Over the past four decades, the foundation has evolved and become the only national force dedicated to solving the cruel mystery of lupus.
What is the mission of the Lupus Foundation of America?
The Lupus Foundation of America’s (LFA) mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.
The LFA is focused on achieving disease-specific outcomes to reduce time to diagnosis, ensure people with lupus have an arsenal of safe and effective treatments, expand direct services, and increase access to treatment.
How does the organization help find a treatment or cure for the disease through research?
In order to accelerate breakthroughs in lupus research and grow our understanding of the disease to find better treatments and ultimately a cure, we are constantly supporting and providing funding for groundbreaking research with the greatest potential impact to improve the lives of people living with lupus. We’re also tackling challenges that may exist with lupus clinical trials, and making sure they are readily available to those who would like to participate.
Moreover, the LFA developed and maintains an online lupus data platform called RAY: Research Accelerated by You, where people with lupus and caregivers share information about their lupus experience to help researchers accelerate the development of new treatments and improve disease outcomes. RAY builds upon more than 40 years of the LFA’s experience in research and engaging people with lupus, and will ensure a bright future for lupus research.
Advocacy is also a major component of the work we do. The LFA looks to engage strategically with the government to secure critical funds for research and develop programs that will advance the search for new treatments.
For Those Affected
What are some of the services and programs for individuals affected by lupus?
People in the lupus community can greatly benefit from the programs and services we offer. Whether you are newly diagnosed, have been living with lupus, or are a friend or family member looking for up-to-date resources and information on lupus, you can visit our National Resource Center on Lupus. The National Resource Center on Lupus is a living collection of trusted online resources created by doctors, scientists, health educators and people with lupus.
Our educational podcast, The Expert Series, is hosted monthly and features leading lupus experts focused on helping people with lupus live a better life. You can catch new episodes airing the third Thursday of each month.
We also recommend that people living with lupus subscribe to our 12-week email series, Take Charge, which is designed to help develop knowledge and skills to better manage the disease. And if you have questions about coping with lupus, helping a friend or loved one cope, or need help finding trustworthy information, our health educators are able to assist and provide non-medical counseling, disease education, information and helpful resources.
LupusConnect™ is also a great resource. It’s an online lupus community where individuals with lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease.
Lastly, we’re introducing a new, free education series, Lupus & You: Answers. Advocacy. Action. and will be hosting its first national event virtually on Tuesday, March 30 from 7-8:15 pm ET. The program brings people impacted by lupus the latest in lupus research, disease management and education.
Building Public Awareness
How does the Lupus Foundation of America build public awareness?
Year-round the Lupus Foundation of America invests countless hours working to increase public awareness of lupus by empowering those impacted by lupus to raise awareness in their communities, through campaigns focused on disease education and efforts in advocacy.
Each year at the Lupus Foundation of America National Lupus Advocacy Summit, the largest lupus advocacy event in the nation, we call upon thousands of lupus advocates to raise their voice and urge their elected officials to support policies that improve the lives of those affected by lupus and funding to advance lupus research. Advocates also work year-round and on local levels to garner support from elected officials. We also have several awareness campaigns that seek to educate the public about lupus including Be Fierce. Take Control., which aims to teach young women at-risk for lupus about the signs and symptoms and ultimately reduce the time to diagnosis.
Additionally, each year during Lupus Awareness Month in May, we empower people with lupus to raise awareness and funds in their communities by sharing their lupus journey on social media and educating others about the disease. We also oversee the World Lupus Federation (WLF), which is a coalition of 200 lupus patient organizations, working together to create greater awareness of lupus, provide education and services to people with lupus and advocate on their behalf.
One of the biggest activities coordinated through the WLF each year is the annual observance of World Lupus Day in May - a day of coordinated activities and efforts by global WLF affiliates designed to call attention to the impact that lupus has on people around the world.
The Biggest Accomplishment
What would be considered as the biggest accomplishment of the Lupus Foundation of America?
For the past 40 years, we’ve made it our goal and continue to succeed in improving the quality of life for people with lupus through research, education and advocacy.
We’ve generated over $159 million in federal funding for more lupus services, research and education. We’ve contributed to every major breakthrough in lupus research and have redefined the field to tackle lupus from every direction and identify the causes of lupus, discover better ways to control symptoms and, ultimately, find a cure for lupus.
We do all of this while providing care and support to people impacted by the devastating disease.
Proud To Be With
What makes you the proudest to be with this organization?
We are proud to be the leading force in the fight against lupus. Together with the lupus community we are making progress, but significant work still remains.
We’re humbled to see the millions of lives we’ve touched and brought relief to, especially with the many challenges the lupus community experienced in the past year during the pandemic.
Throughout the journey and our mission to end lupus, we remain unwavering and that gives us hope for a brighter future.
Youth Advocacy Summit
Please tell us more about the Youth Advocacy Summit!
Each year during our National Lupus Advocacy Summit, we host our Youth Congress specifically for lupus advocates under 21 and their families. This focused part of our Summit is extremely important for several reasons.
First, it empowers youth living with lupus to share their story and use their voice in the fight to end lupus, often bringing an immense sense of purpose to these young advocates. It also enables them to connect with others their age that are coping with living with disease while also enjoying their childhood and young adult years.
Additionally, during this event specifically for youth living with lupus, experts discuss topics including mental health and wellness, and resources specific for youth with lupus.
How Gen Z Can Get Involved
As a teen and young adult-focused magazine, are there ways for Gen Z to get involved within the Lupus Foundation of America?
Absolutely! Everyone can get involved and help bring an end to lupus. We encourage all, especially the youth to join the cause and educate themselves on this.
You can get involved and raise lupus awareness by making a donation, starting your own fundraiser, signing up and participating in programs like Walk to End Lupus Now; Race to End Lupus with Team Make Your Mark; starting a fundraiser in your community; Livestream to End Lupus, or by simply sharing your story on Voices of Lupus, our personal stories platform.
Lastly, don’t forget to get involved and raise your voice during Lupus Awareness Month in May.
To learn more about the Lupus Foundation of America, visit lupus.org.
A big thank you to the Lupus Foundation of America and Ms. Shannon Brown for this interview!