BOSTON — Brianna Worden was thrilled to win the title of Miss Teen New York International 2013, a victory made even sweeter as she did it on a neurofibromatosis platform, bringing awareness to what is referred to as the invisible disease.
“Being crowned was such a huge honor and a significant accomplishment in my life,” said the 23-year-old Boston University graduate. “I have always strived to be a spokesperson for (neurofibromatosis), and once I was crowned more individuals wanted to hear my story and my passion for fighting for a cure for (neurofibromatosis).”
Neurofibromatosis is characterized by changes in skin coloring and the growth of tumors along nerves in the skin, brain, and other parts of the body, and those with the disease can appear to be perfectly healthy. Worden, who grew up in a small town in the Catskills in upstate New York, was diagnosed with neurofibromatosis type 1 when she was 2 months old, “the most common neurological disorder, but no one knows about it.”
“I am a spontaneous mutation, meaning I am the only person in my family to have neurofibromatosis,” she said.
Worden has endured more than 10 surgeries at Boston Children’s Hospital, the first one at age 7, which was an 18-hour spinal fusion that forced her to learn to walk again, and she her vocal cords paralyzed for six months after a throat tumor removal. Her most recent surgery was a tumor debulking procedure in 2016 where she had about 3 pounds of tumor removed from her left arm, and in the upcoming months she will be meeting with a plastic surgeon to talk about another tumor debulking to her left arm.
Worden has been advocating for neurofibromatosis on a national level since she was 8 years old, traveling to various places such as Las Vegas, Chicago, Detroit, Boston and Washington, D.C., where she has spoken at multiple symposiums and neurofibromatosis walks and forums as an advocate for the disease.
“I have also been involved in clinical studies where I vlogged my daily life with NF, where other patients with NF could connect and learn from each other and share stories,” she said. “NF awareness is vital to me because NF not only impacts my life or my family it affects two and a half million people worldwide who suffer from the complications of NF and their families as well. Each of us has our personal stories, but I want to be a voice and advocate for all people impacted by this disorder. I want others with chronic health needs to know that they are not alone.”
Worden is a Children’s Tumor Foundation ambassador and has testified before the U.S. Federal Drug Administration twice, which she said, “was one of the most extraordinary opportunities I have had as a patient advocate.”
“I was able to inform doctors and scientists that not only does NF impact patients physically, but it impacts them emotionally as well,” she said. “Therefore, it is essential to look at the patient and develop treatments to help their overall quality of life. Having NF has not been easy, but it has taught me to enjoy the little things in life, to be positive, and to live my life the best that I can. I will dedicate my life to fight for treatments and for the lives affected by NF.”
Annette Bakker, president of Children’s Tumor Foundation, said the data sharing and collaboration that led to COVID-19 treatments and vaccines being developed more quickly can be used as a model for all diseases, including neurofibromatosis.
“The urgency of needing to find treatments for COVID-19 revealed what is possible when key stakeholders — for example, academic researchers and the pharmaceutical industry — work together to accelerate the process of getting drugs to patients,” Bakker said. “Academics shared valuable information across borders within hours and pharma firms developed vaccinations in record time. But it shouldn’t take a pandemic to bring cures to patients.
“Right now, it can take decades to turn academic discoveries into useable treatments,” she said. “Meanwhile, patients with NF, like Brianna, are desperately waiting for medical advances. To shorten this timeline, foundations like mine are not blaming the community but are developing incentives, which boost collaboration when needed. We are also inviting policymakers and patients to speak up.”
Neurofibromatosis Northeast is a nonprofit 501(c)(3) organization out of Burlington that was incorporated in 1988 by patients and families who are in some way affected by the disease. It serves Massachusetts, Maine, New Hampshire, Vermont, Connecticut, Rhode Island, Pennsylvania, New Jersey and New York, and according to its website advocacy has become one of the most important ongoing programs of the organization.
New Executive Director Sharon Klein, a longtime Bolton resident, said NF Northeast is working to eradicate the disease and support those with neurofibromatosis, such as Worden.
“We fund advocacy work, patient resources, and research for NF and allied diseases,” Klein said.
Klein said it is rewarding to hear success stories such as Worden’s.
“Brianna is an inspiration and someone who faces challenges head on,” Klein said. “She is a strong advocate for other people touched by NF and believes that her advocacy work will bring hope and awareness about NF.”
Neurofibromatosis Northeast has some other local connections as well — Treasurer Bob Ryan graduated from UMass Lowell and Director of Operations and Events Diana Flahive lives in Groton.
According to the organization’s website, since joining other neurofibromatosis organizations from around the country in 1996 to create the National NF Advocacy Network, the staff have worked closely with members of the House and Senate to secure over $600 million for the disease, not only at the National Institutes of Health but also through the Department of Defense Congressionally Directed Medical Research Program. Advocates from NF Northeast have presented testimony before the House Appropriations Subcommittee on Labor, Health and Human Services and Education as well as the Senate and House Appropriations Subcommittees on Defense.
Klein said the first FDA approved drug, Koselugo, was released in April last year to treat patients ages 2 to 18 years old who have NF1.
“There are many other studies being conducted and scientists are getting closer to approval for other therapies,” she said. “However, we need more funding and more science.”
Worden said her pageant platform was important to her, not only to bring awareness to neurofibromatosis but to also use herself as an example of someone with the disease who is going after and achieving their dreams.
“Not only did I want to advocate for NF, but I wanted to represent body positivity and break the ‘perfect body’ stereotype,” she said. “I mean, here I am covered in scars and tumors doing a beauty pageant. My imperfections are my perfections and while I have tumors, they do not define who I am. They are a part of my story and my strength.”