“Living with lupus [a systemic autoimmune disease] is difficult. I thrive by staying positive,” says 2019 Team of Advisors member, Juana (@Juanymata). Advocating on behalf of lupus patients like herself is one key way Juana stays positive.
Off and Running
Only months after being diagnosed with rheumatoid arthritis and systemic lupus erythematosus, Juana Mata and her two sisters formed a team to run in a local lupus fundraiser. They soon understood the pressing need for more support and useful information for patients, their families and caregivers. They also understood the need for more funding on the path to a cure.
Knitting Communities of Hope
Tejiendo Una Comunidad de Esperanza
Less than two years later, the sisters launched Looms4Lupus.org, a support group to empower minority families affected by lupus to take charge of their lives and kindle hope. For nine years, they have been running bilingual monthly support groups and include art therapy sessions in the central San Gabriel Valley region of Los Angeles County, California. They support not only those living with the illness but also caregivers and loved ones. And just this year, they launched a Facebook Live video to broaden their reach.
Advocating with Local, State & National Officials
Beyond helping families through in person and virtual support groups, Juana advocates with officials at all levels of government to raise awareness, amplify the patient’s voice and spur federal funding for research. In the last two years, she has been an active advocate in Washington, D.C., sharing her story with legislators to communicate the urgent need for research funding for lupus and fibromyalgia. In recognition of her lobbying efforts, she was invited to represent Southern California in accepting the proclamation declaring Lupus Awareness Month in California. And, she was honored to receive the proclamation declaring World Lupus Day from Senator Susan Rubio in Sacramento.
Juana is also a frequent speaker at autoimmune disease conferences across the country and a member of many task forces, councils, and associations. She also gets her story out across media channels—from TV interviews to writing blog posts for the Lupus Research Alliance to serving as a PatientsLikeMe Team of Advisors member.
“Living with lupus and overlapping conditions is difficult. Advocating helps me stay positive knowing that my efforts will not only help me, but also future generations,” explains Juana. “My work gives me and others hope for new medications, and one day maybe even a cure for lupus and overlapping conditions.” That’s 60 hours a month that Juana logs in with her sister Estela by her side generating faith in a better future.
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