Introducing the CCPA Partner Spotlight Series: This series highlights the work of partners at organizations advocating for patients with chronic illness. Featured partners elevate the voices of patients with chronic illness at the local, state, or national level while working to foster a community of support and empowerment for the patients they represent.
Juana and Estela Mata co-founded Looms4Lupus alongside their sister Aracely in 2011, after Juana was diagnosed with SLE Lupus and rheumatoid arthritis in 2009. Looms4Lupus provides support for Lupus survivors, their families, and caregivers, while educating and advocating on behalf of patients to create an environment of hope for individuals who suffer from chronic illness.
Juana Mata, chief financial officer of Looms4Lupus, is dedicated to raising awareness and advocating for lupus survivors at a local, state and national level. She has shared her story in front of Congress to raise awareness about the importance of federal support for lupus and fibromyalgia research, and was honored as the 48th Assembly District Woman of the Year in 2018 by Assemblywoman Blanca E. Rubio. Juana served as a board member of Lupus and Allied Diseases Association, Inc. from 2019 to 2020, was a Patients Like Me 2019 Advisor and a Peer Reviewer for the Department of Defense’s Congressionally Directed Medical Research Programs in 2018 and 2019. Currently, she is heavily involved with National Institute of Health’s All of Us Research Program, which is building a health database to learn more about chronic disease prevention and treatment.
Estela Mata-Carcamo, president of Looms4Lupus, shares her sister’s dedication to patient advocacy and education. Estela has fibromyalgia, and also is an active and involved caregiver. She works with numerous local, state, and national organizations to spread the word about lupus, fibromyalgia, and other related diseases. She also served alongside her sister as a board member for Lupus and Allied Diseases Association from 2019 to 2020.
Looms4Lupus has actively participated in advocacy efforts on behalf of patients with chronic illnesses, partnering with organizations such as Lupus LA, Lupus Research Alliance, Lupus and Allied Diseases Association, Inc., More than Lupus, We Win Foundation, Howse Foundation, International Support Fibromyalgia Network and other local, national and international organizations. They are active participants in Congresswoman Grace Napolitano’s Mental Health Consortium, and they have raised money for Lupus Foundation of America, Lupus International and community organizations.
Juana and Estela host in-person and virtual support groups in English and Spanish for those living with lupus, fibromyalgia and other overlapping conditions. They empower individuals to be part of their care team, learn about their illness, treatments, clinical trials, and connect them with others who suffer from similar conditions. Their most recent Spanish support group was recorded and is available on their Facebook page, and upcoming support groups are advertised there as well. Their page also lists upcoming advocacy events If you would like to learn more about the Mata sisters’ work, you can visit their website, or follow them on Facebook and Twitter.