Santa Clarans recently met with government officials for Lupus Research Alliance Lupus Advocacy Day 2017, an event pulling together lupus advocates from across the country to meet with members of Congress for three main asks–healthcare reform principles for people with lupus, a $2 billion increase to the National Institutes of Health budget for fiscal year 2018 and $5 million for the Lupus Medical Research Fund for the 2018 Department of Defense Appropriations Bill.
Executive Director of the Lupus Foundation of Northern California Erin Badillo and Volunteer Social Media Coordinator and Patient Education Teacher Christine Von Raesfeld were among the Santa Clara advocates attempting to obtain new members of the Congressional Lupus Caucus, established to provide a forum for members of Congress and their staff to engage in dialogue to improve the quality of life for people with lupus and their caregivers through supporting lupus research and increasing awareness of the condition.
Von Raesfeld, an active volunteer for the Lupus Foundation of Northern California and someone afflicted with a severe form of central nervous system lupus that has affected her brain, said they received a great response from individuals they encountered during the trip.
“We met with two staff members [for Dianne Feinstein and Kamala Harris] and three actual members–Ro Khanna, Anna Eshoo and Zoe Lofgren,” she said, noting Eshoo had a friend who recently died as a result of complications from the disease. “Zoe has actually been a huge advocate for lupus and is solely responsible for getting additional members added to the Lupus Caucus. Each one was open to our requests and agreed to all of our asks.”
Von Raesfeld was tasked with the healthcare reform ask, attending the event to share her story as a person living with the disease, explaining the damage that has been done by various medications and shedding light on what it’s like for a person living with a chronic condition in the Bay Area on Social Security.
“I live with my parents,” she said, “but without them, I could not survive here. Ro Khanna … is working to improve the situation and to make it possible for the disabled and those on Social Security to remain the Bay Area.”
She said the experience was positive and hopes she’ll get the chance to continue more advocacy work in the future.
“The experience was electrifying,” she said. “Being able to walk the halls of Congress and sit and meet with these influential people was amazing. Before this experience, I did not think that one individual person could impact our government, but I learned that it actually does. They listened to our stories and many had been impacted by the disease, also. Each person we met with was welcoming and thanked us for traveling to meet with them.”
Currently, the Lupus Foundation of Northern California is working with Santa Clara City Council to declare May Lupus Awareness Month. The foundation will also be holding a 5K at West Valley College on June 11. Visit www.lfnc.org for more information.
