Did you know that March is Autoimmune Disease Awareness Month?
Teen magazine had the incredible opportunity to interview the Lupus Foundation America, which has pioneered the fight against the disease lupus for the past 40 years and counting.
From all things lupus disease, mission, and how you can get involved as a teenager, we’re here to share some important words and raise awareness.
Introduction to lupus disease
What exactly is lupus disease?
Lupus is a chronic, incurable autoimmune disease in which your immune system, which is supposed to fight infection, begins to attack healthy cells and tissues in your body.
It can affect any organ system (for example, the skin, lungs, kidneys, brain, and heart) and causes symptoms that can range from extreme fatigue, debilitating joint pain, and rashes to a heart attack or stroke.
Anyone can develop lupus, but it is commonly found in women between the ages of 15 and 45, and two to three times more likely to develop in women of color.
The creation of the Lupus Foundation of America
How was the Lupus Foundation of America created?
The Lupus Foundation of America was founded in 1977, when lupus community leaders across the country recognized the need to elevate the disease to the forefront of the national health care agenda.
Over the past four decades, the foundation has evolved into the only national force dedicated to solving the cruel mystery of lupus.
The mission
What is the mission of the Lupus Foundation of America?
The mission of the Lupus Foundation of America (LFA) is to improve the quality of life for all people affected by lupus through research, education, support and advocacy programs.
The LFA is focused on delivering 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.
Find a treatment
How does the organization help find a treatment or cure for disease through research?
To accelerate breakthroughs in lupus research and deepen our understanding of the disease to find better treatments and ultimately a cure, we consistently support and fund ground-breaking research with the greatest potential impact to improve the lives of people with lupus. We also address the challenges that may exist with lupus clinical trials and ensure that they are easily accessible to those who wish to participate.
Lupus affects different people in different ways, but many people with #lupus have problems with their kidneys. #FactFriday #LupusFactFriday #Monthnationaldurein
— Lupus Foundation of America (@LupusOrg) March 5, 2021
Additionally, the LFA has 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 on more than 40 years of LFA experience in research and engagement of people with lupus, and will ensure a bright future for lupus research.
Advocacy is also a major component of our work. The LFA seeks to strategically engage with government to secure critical research funds and develop programs that will advance the search for new treatments.
For those concerned
What are some of the services and programs for people affected by lupus?
People in the lupus community can greatly benefit from the programs and services we provide. Whether you have just been diagnosed, are living with lupus, or are a friend or family member looking for up-to-date lupus resources and information, you can visit our National Resource Center at lupus. The National Lupus Resource Center 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 who aim to help people with lupus live better lives. You can see new episodes airing on the third Thursday of every month.
We also recommend that people living with lupus subscribe to our 12-week email series, Take Charge, which is designed to help build knowledge and skills to better manage the condition. And if you have questions about coping with lupus, helping a friend or loved one cope, or need help finding reliable information, our health educators are ready to help. to help you and to provide non-medical advice, disease education, helpful information and resources.
LupusConnect™ is also a great resource. This is an online lupus community where people with lupus and their loved ones can connect with others like them to share their experiences, find emotional support, and discuss practical ideas for coping with everyday challenges. of the disease.
Finally, we’re introducing a new free educational series, Lupus & You: Answers. Advocacy. Stock. and will virtually host its first national event on Tuesday, March 30 from 7-8:15 p.m. ET. The program brings people affected by lupus the latest in lupus research, disease management and education.
Public awareness
How does the Lupus Foundation of America raise awareness?
Throughout the year, the Lupus Foundation of America invests countless hours of work in raising awareness about lupus by empowering people affected by lupus to raise awareness in their communities, through campaigns focused on education about lupus. diseases and advocacy efforts.
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Each year at the Lupus Foundation of America National Lupus Advocacy Summit, the nation’s largest lupus advocacy event, we call on thousands of lupus advocates to raise their voices and urge their elected officials to support policies that improve lives. people affected by lupus. and funding to advance lupus research. Advocates also work year-round and at the local level to gain support from elected officials. We also have several awareness campaigns that aim 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 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 for their name.
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One of the biggest activities coordinated by the WLF each year is the annual celebration of World Lupus Day in May – a day of activities and efforts coordinated by WLF’s global affiliates to bring attention to the impact of lupus on people around the world.
The greatest achievement
What would be considered the greatest accomplishment of the Lupus Foundation of America?
For the past 40 years, we have made this our goal and continue to be successful in improving the quality of life for people with lupus through research, education and advocacy.
We generated more than $159 million in federal funding for more lupus services, research and education. We’ve contributed to every major breakthrough in lupus research and redefined the field to fight lupus in every direction and identify the causes of lupus, discover better ways to control symptoms, and ultimately find a cure. lupus.
We do all of this while providing care and support to those affected by this devastating disease.
Proud to be with
What makes you most proud to be with this organization?
We are proud to be the driving force in the fight against lupus. Together with the lupus community, we are making progress, but there is still a long way to go.
We are honored to see the millions of lives we have touched and relieved, especially with the many challenges faced by the lupus community over the past year during the pandemic.
Throughout the journey and our mission to end lupus, we remain unwavering and it gives us hope for a brighter future.
Youth Advocacy Summit
Please tell us more about the Youth Advocacy Summit!
Each year at our National Lupus Advocacy Summit, we hold our Youth Congress specifically for lupus advocates under 21 and their families. This focused part of our Summit is extremely important for several reasons.
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First, it empowers young people living with lupus to share their stories and use their voices in the fight to end lupus, often bringing immense sense of purpose to these young advocates. It also allows them to connect with others their age who are living with the disease while enjoying their childhood and young adult years.
Additionally, at this event specifically for youth with lupus, experts discuss topics such as mental health and wellness, as well as specific resources for youth with lupus.
How Gen Z can get involved
As a magazine focused on teens and young adults, are there ways for Gen Z to get involved with the Lupus Foundation of America?
Absolutely! Anyone can get involved and help end lupus. We encourage everyone, especially young people, to join the cause and learn about it.
You can get involved and raise awareness for lupus by donating, starting your own fundraiser, signing up and participating in programs like Walk to End Lupus Now; Race to end lupus with the Make Your Mark team; start a fundraiser in your community; Stream live on End Lupus, or simply share your story on Voices of Lupus, our personal storytelling platform.
Finally, don’t forget to get involved and make your voice heard during Lupus Awareness Month in May.
Continue
To learn more about the Lupus Foundation of America, visit lupus.org.
Their Instagram can be found at @lupusorg and Twitter at @LupusOrg as well.
Many thanks to the Lupus Foundation of America and Mrs. Shannon Brown for this interview!
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