When faced with a potentially devastating medical diagnosis, many individuals may feel overwhelmed and alone with their illness. I know I did. I was certain no one knew what it was like to be me. But I was quickly proven wrong when I joined a Facebook group for those diagnosed with Hashimoto’s or other thyroid issues. The comradery I experienced as a result has made me feel validated and taught me that I’m not lazy or inept because I struggle. We vent sometimes, or ask for advice, but just as often share memes to poke fun at ourselves. After all, sometimes all you can do is laugh.
Technology has made finding support and advice easier than ever, creating connections which were once impossible. In light of the COVID-19 pandemic, these bonds have become invaluable for many, regardless of whether individuals have chronic illnesses or not. As we experience isolation, it’s easy to be drawn back into thinking no one is experiencing what we are. As with my experience, however, this is rarely the case. An enormous silver lining has been organized by the Lupus Foundation of America to promote connection digitally beyond Facebook groups. While we may not have the ability presently to gather in large numbers as we’d usually do, we do have the ability to reap similar benefits through livestreams or online classes. In that vein, an invaluable opportunity has presented itself for those who have been diagnosed with systemic lupus erythematosus (SLE).
2021 Lupus Advocacy Summit: March 2 & 3, 2021 PLUS On-demand through April 2, 2021
The 2021 Lupus Advocacy Summit, normally held on Capitol Hill in Washington, DC, will hold its second-annual digital event March 2 and 3, 2021. Not only was the 2020 event one of the first of its kind, it also boasted an attendance of nearly 3,000 advocates with only a week’s notice. Such a response is certainly overwhelming. However, this year’s event is promising to be even better. The best part? You don’t need to be diagnosed with Lupus to participate. Those who are undiagnosed are just as welcome. You can be a family member or friend of someone connected to the illness, a caregiver, a health professional, or an individual merely seeking to understand the suffering of others better. Whichever classification you fall under, it is important is for attendees to share their ideas, their passion, their energy.
Free Registration for Online Summit
If you’re interested in joining the cause, you can register here for FREE. Sounds too good to be true, right? You can attend the conference from the comfort of your own home, joining thousands of other advocates who wish to learn about lupus and the ongoing efforts to treat it. If you are unable to digitally attend the whole two-day conference, that’s not a problem. The Summit sessions will be recorded to be streamed on-demand until April 2. During that one-month window, you have the ability to catch up on anything you missed or revisit sessions that were particularly interesting to you.
So, what should you expect from the Summit? Both days at 11 a.m. EST, there will be a virtual lobby to check out education and advocacy groups in the Exhibit Hall, as well as a Networking Lounge in order to connect with fellow advocates from all over the country, before the day’s session begins. The sessions on the March 2 will focus specifically on research about Lupus, specifically how COVID-19 has affected those efforts and information on emerging treatments. On March 3, the topics will center on advocacy and access, including ensuring access to new and existing treatments and expanding resources to manage the disease through advocacy. A more detailed breakdown of their preliminary schedule is available on the website, as well as a general list of FAQs.
Youth Congress Session for Lupus Advocates 21-years-old and younger
If you’re a lupus advocate who’s 21 years old or younger, you and your family also have the option of attending the Youth Congress session which will occur from 6 p.m. to 7:15 p.m. EST on both days. The sessions will focus specifically on growing up with lupus, as well as learning about available support and resources for youth diagnosed with the disease. Youth will have a chance to learn about how to track symptoms, identify disease triggers, and better cope with the disease. In addition, they’ll be given tailored advocacy training which will help them tell their lupus story and the impact it has on youth. Those who attend the Youth Congress are encouraged to participate in the main Digital Summit programming, but it isn’t mandatory.
With your attendance, you will be heeding the Lupus Foundation of America’s rallying call: “Help Us Solve the Cruel Mystery.” As the largest lupus advocacy summit, the group is well on its way to achieving that ambitious goal. In past years, the foundation has managed to raise billions for research. This has largely been thanks to advocates scheduling in-person meetings with members of Congress, urging our congressional leadership to increase research funding.
With the consideration of COVID-19, the Summit, like last year, will instead communicate the message to Congress through conference call and email. Those who were able to register before February 8 will have the opportunity to participate in these virtual meetings on March 4. Additionally, regardless of when you registered for the summit, the foundation will email instructions on how you can contact Congress members using social media.
Every person’s efforts count in the fight against lupus. We will conquer . . . together.
Learn more about the 2021 Lupus Advocacy Summit
Learn more about Specialty Plasma Donations to support Lupus Antibody Research and Diagnostics
Jessica Nelson, Autoimmune Disease Research Advocate
Jessica is a super-senior at BYU, studying English Literature with a minor in Creative Writing. In 2017, she was diagnosed with Hashimoto’s Thyroiditis and continues to struggle with the illness. Jessica loves listening to audiobooks, especially YA fiction, and wants to be an author herself someday. She’s a Ravenpuff (Ravenclaw and Hufflepuff), and a huge D&D nerd. Her hobbies include singing, dancing, hand lettering, going to Comic Con, and watching way too much Netlix and Hulu! She lives in Provo with her family. Her fiancé, Daymen, is a huge support in her journey through chronic illness.