Lupus Advocate Shares Her Advocacy Summit Experience
In 2018, Valori was in her second year of law school, she devoted countless Pro Bono hours of work at her school’s Immigration Clinic and she was a recent newlywed. Through it all she was also feeling aching joints, severe pains, and had terrible colds and infections. What she thought was just caused by stress from studying for her law degree got worse, and after countless doctor’s visits, referrals, labs and biopsies, she was later diagnosed with lupus nephritis.
After her diagnosis, while Valori balanced law school classes she was also balancing countless doctor’s appointments, lab tests and endless calls to her insurance company. And though she had support from her husband and family members, she often felt alone in her daily battle with lupus. She turned to what she was good at – research – and found the Lupus Foundation of America. Among the resources for talking to loved ones about lupus, lupus research and more, Valori came across the opportunity to become a lupus advocate.
“I grappled with the decision of becoming an advocate,” shared Valori. “I saw my health as a private matter. I was fearful of the effects lupus may have on my future job prospects or anything else I may encounter going forward.” But after many conversations with her sister she decided that she needed to channel her power into something greater than herself. “I was raised to advocate for my community over self and I have approached every opportunity I can in that way – lupus would not be any different.”
In 2019 Valori attended the National Lupus Advocacy Summit in Washington, DC. Her family from Texas flew in to meet her and together they made instant connections with those around them who truly understood what they went through – from her parents and husband as caregivers to Valori who was able to form relationships with other people living with lupus.
“We go through parallel and life changing circumstance. Talking to each other and laughing together helps immensely,” shared Valori. During the Summit, they also felt like they were making a difference when they met with their representatives to share their lupus experience to raise awareness, and advocate for federal lupus research and education programs.
And while the 2020 National Lupus Advocacy Summit went digital due to the coronavirus pandemic, Valori still had the same amazing experience. “I appreciated being able to participate in the Summit safely from home, and even got to share the experience with my family members and friends,” said Valori. She got to connect with other lupus warriors just like she did previously – and her husband joined telephone meetings with their members of Congress when Valori wasn’t feeling well.
“I would encourage everyone to participate in the 2021 Digital Lupus Advocacy Summit this March, because by doing so they will be helping to change the future of this disease for the better.”
Register today to attend the 2021 Digital Lupus Advocacy Summit March 2 – 4. Join Valori and thousands from the lupus community as we come together virtually for two days of education and networking opportunities focused on lupus advocacy, research, and drug development. And on the final day, meet virtually with your members of Congress to advocate for policies to improve the quality of life for everyone affected by lupus.