CCU student pioneers MS awareness programs in Puerto Rico
by Pippo
Vilmarie Ocasio never expected to become an advocate for multiple sclerosis (MS) and cancer prevention awareness. But after lobbying the senate of Puerto Rico, becoming the founder and CEO of a nonprofit organization, and winning several awards for her work, the Coastal Carolina University student has made a significant impact for MS patients in Puerto Rico.
“It started off small and it became huge,” said Ocasio. “It takes time and effort, but it’s not impossible [to make a difference].”
Ocasio, a native of Puerto Rico, is a sophomore communication major with a minor in public health. She completed one semester of college in Puerto Rico, then she transferred to CCU for the spring semester in 2017.
She moved to the United States with her mother and brother after Hurricane Maria left 80 percent of the island with no power or running water in fall 2017. “My family and I decided to move to South Carolina because, with my mother’s condition, she could not handle the circumstances that the island presented,” said Ocasio.
Ocasio’s mother, Vilma, had sought medical treatment for various symptoms since 2008, but her doctors were unable to diagnose her illness. She showed typical MS symptoms, such as fatigue, numbness and weakness in her right leg, tingling and pain throughout her whole body, and electric-shock sensations in her hands, face and legs. Eventually, in 2014, a neurologist diagnosed her mother with multiple sclerosis, a disease that attacks the central nervous system.
“My family and I didn’t have access to information about MS,” said Ocasio. “At that time, we felt lost and really unhopeful about my mother's outcome. I even thought that I would not have a mother by the next year.”
The diagnosis was the impetus for Ocasio’s work. "I decided to do my Gold Award for Girl Scouts [to raise awareness about the disease]. In 2015, I started researching and getting an idea of what I wanted to do,” she said.
Beginning in 2016, she started working on a project that resulted in her winning the Girl Scouts Gold Award as well as the Girl Scouts National Young Women of Distinction Award, both in 2017. “My mission was to orient doctors in Puerto Rico about MS and how to assist patients,” she said. Ocasio’s plan for action did not stop there; the project led her to create a nonprofit organization that educates the public about MS called Community Organization of Multiple Sclerosis and Cancer Inc. (COMSC).
The organization coordinates lectures and distributes information to students, hospital administrators, doctors, MS patients and the general public in Puerto Rico. COMSC also raises awareness about cancer prevention, which is important to Ocasio since her grandfather and great-grandmother both died of cancer.
The success of her organization took her by surprise. “I made a page about MS and cancer prevention in 2016, and now I have 2,500 followers from across the world. Many patients write me through Facebook and ask me questions about the disease because they don’t have the right resources,” said Ocasio.
“I started doing more research about what else I could do to help people in Puerto Rico with MS. I saw that there was a bill [pending] in the senate in Puerto Rico,” said Ocasio.
Senate Bill 1180 proposed to create an obligatory registry of people diagnosed with MS in Puerto Rico – she immediately became an advocate for it. At just 16 years old, she caught the attention of legislators by emailing, calling and personally lobbying the senate offices in San Juan, Puerto Rico, and meeting with former Gov. Alejandro Garcia Padilla at La Fortaleza in San Juan.
The bill passed unanimously and became Law 85 on July 22, 2016, creating the first obligatory registry for MS in the world, and making it easier for scientists and doctors to receive federal funding for research and treatment. Thanks in part to Ocasio’s work in getting the law approved, there is also ongoing genetic research with the University of Miami studying why MS is so prevalent in Hispanic populations. A study by the National Center for Biotechnology Information found that from 2013 to 2016, a total of 583 new MS cases were diagnosed in Puerto Rico.
After Hurricane Maria, Ocasio aided the community in Puerto Rico in another significant way. MS patients were suffering excessively due to high heat and lack of electricity. She asked about 30 patients for their addresses through Facebook and surprised them by sending them portable air conditioners purchased with donations from COMSC’s Facebook followers.
This year, Ocasio is working to provide her hometown of Manati with air conditioners for the 16 MS patients living there.
In April 2018, Ocasio won the Rising Young Latina Award from the Association of Latino Professionals for America, spoke at its annual conference, and was awarded a scholarship. "Bringing this project into fruition has not been easy, but along the ride, I always reminded myself that if one door closes, another one opens,” said Ocasio in her speech at the ALPFA conference, held at Columbia University in New York.
The latest recognition for her efforts came on July 1, when she received the Diana Award from the nonprofit organization named for Princess Diana that recognizes young people who have made a significant impact in their local communities.
In March, which is MS Awareness Month, Ocasio set up a table on CCU’s campus to spread awareness about her social media campaign. She encouraged people to wear something orange, then take a picture and post it to social media using the hashtag #MSwithStyleAwarenessMonth. Her campaign received local media recognition when WBTW News 13 aired a story on Ocasio's efforts. She encouraged the local community to use the hashtag and follow her organization’s social media pages.
Ocasio is involved with several organizations at Coastal, including the WCCU Radio station. She attended the Women in Philanthropy and Leadership’s 2018 Women’s Leadership Conference in February, where she met Jenna Bush Hager and Barbara Pierce Bush, and this past spring she was on the leadership team for CCU's Relay for Life program, which reached the $1 million mark in total funds raised to date.
Even though the spring semester was her first at CCU, Ocasio has already made a positive impact on campus. “She has spearheaded awareness campaigns for cervical cancer and multiple sclerosis and has ideas for both of those projects to grow in the future,” said Amelia Carte, adviser for Colleges Against Cancer, who worked with Ocasio during preparation for the event. “She is not afraid to try big things, and her passion for her causes is inspiring to those around her.”
After she earns her bachelor’s degree from CCU, Ocasio plans on continuing to grow her nonprofit organization and help MS patients in Puerto Rico.
Her mother has had an MS relapse recently. “Her mental state is always a positive one,” said Ocasio, who is hoping for the best. “She is taking medication so that her condition can stabilize again and she can recover.”
“I’m very proud of my daughter and really satisfied with all of her accomplishments,” said her mother, Vilma Espada. “Also, I am so grateful that she continues to help people.”
For more information about cancer prevention and MS, follow COMSC’s social media:
Facebook: @MSandCancerINC
Instagram: @comsc_
To donate to COMSC, visit https://www.paypal.me/MSCancer.
