Vision: A world where no one suffers or dies from leptomeningeal cancer
Mission: To improve quality and extend quantity of life of all people diagnosed with leptomeningeal cancer by:
The Leptomeningeal Cancer Foundation was started by Helaine Bader and Doug Skinner, the parents of Theo Skinner. Theo was a kind, happy, intelligent and loving kid, with an incredible sense of adventure, a huge heart and a smile that lit up the room. He loved playing soccer and baseball, skiing in the mountains of Colorado, surfing the waves, being a good student, and volunteering in his community. He listened to all kinds of music, from pop, rock, and rap to jazz, Elvis and Frank Sinatra. He was a genuine and caring friend to many, and loved his family, including his two pups, fiercely. And like his parents, he was passionate about traveling and exploring the world.
In 2019, at the age of 12, Theo was diagnosed with meningeal melanocytoma, a rare tumor on the lining of the brain (the meninges). He underwent 3 brain surgeries and targeted radiation to treat the tumors at Stanford, while he continued to excel in school, play sports and spend time with his friends. In 2022, the cancer spread to his leptomeninges and numerous small tumors were seen down his spine. Theo had proton therapy to his spine at Memorial Sloan Kettering in NYC, while continuing to train for his high school soccer season. He made the National Honor Society that fall, and played on his high school varsity soccer team, starting in the state championship game.
In February of 2023, after a weekend of skiing black diamonds with his friends, Theo ended up in the emergency room with a drooping face, numbness in his arm and leg, and confusion. Although he recovered from that scary incident, his health started to decline. He tried multiple treatments, and at one point was taking 30 pills a day. He eventually lost his hearing, the use of his legs, and the use of his left arm. His vision started to fail and he had trouble with short-term memory. Theo refused to stop living and stayed hopeful and optimistic, continuing to do physical and occupational therapy. But the cancer kept spreading.
Helaine and Doug continued to search everywhere for any possible treatments, miracle cures and glimmers of hope. There was nothing available. On February 18th, 2024, Theo took his last breath.
Theo’s light burned bright and touched so many people. And he is not yet done helping people. To further the impact of his short but incredible life, the Leptomeningeal Cancer Foundation was formed. No one should go through what Theo went through. And no family should have to see their loved one suffer or hear that there are no treatments available. But unfortunately, everyday, someone is told that they have leptomeningeal cancer. More than 110,000 people in the U.S. are diagnosed with leptomeningeal cancer every year! This is a heartbreaking disease and we cannot sit back and watch this continue to happen. At this point, leptomeningeal cancer is universally fatal. Some people get a few years extra with treatment, but no one survives. Education, awareness, research and funding are urgently needed. And that’s why we created this foundation as Theo’s legacy: to find answers and offer hope.
The goals of the organization are to:
Helaine Bader is a passionate public health advocate and the Vice President of Education for HealthyWomen. She has spent the last 30 years in the fields of health education, health communications and advocacy – helping people understand how to stay healthy and prevent disease; working with grassroots organizations to address health disparities; and bringing multidisciplinary organizations, experts and institutions together to tackle issues through collective action. Earlier in her career, Helaine conducted epidemiological research in the perinatology department at a hospital and worked as a fellow in the breast cancer division of the National Cancer Institute. She later managed the global communications strategy for a Center of Excellence in Drug Discovery at GlaxoSmithKline and worked for Digene (later QIAGEN), directing global advocacy efforts in cervical cancer. She has consulted with numerous organizations over the years, helping create and implement culturally appropriate educational and awareness campaigns to address disparities in health. Helaine is also co-author of New Dimensions in Women’s Health, now in its 9th edition.
Helaine has a Bachelor of Art degree from the University of Pennsylvania and a Master in Public Health degree from the University of Pittsburgh.
Kyle Greenemeyer is the twin sister to Briana Greenemeyer. As with many twins, while distinctly different, they were a harmonious balance to each other and often inseparable.
Briana loved gardening, going to the lake, leading fundraisers at work, bonfires, Winnie-the-Pooh, and attending beer tastings with Kyle. She had graduated cum laude from University of the Ozarks with a BS in Environmental Studies and worked at Avaya Technologies for 17 years until her diagnosis.
In June 2017, Briana began having severe headaches. CT and MRI scans revealed a large brain tumor. Surgery to resect the tumor led to a diagnosis of melanoma, even though she had never had melanoma on her skin or other organs. Four weeks later, Briana developed a facial droop with reduced hearing and the first suggestion of leptomeningeal spread was noted in her MRI report. LMD was ruled out, however, so Briana proceeded with standard-of-care for stage 4 melanoma. Her facial droop regressed after radiation, and her numerous symptoms were attributed to side effects of treatment. In January 2018, her facial droop returned and an MRI revealed extensive LMD in her brain. A month later, a full spine MRI revealed extensive LMD in her cervical and lumbar spine.
As Briana’s caregiver, Kyle was responsible for managing all aspects of Briana’s treatment, travel, everyday health, and quest for answers. In the beginning of this journey, they both felt very alone navigating the diagnosis of LMD, due to its perceived rarity. Kyle spent many hours reading articles regarding treatments and clinical trials for LMD, and realized the magnitude of this disease and the various cancers involved. In January 2019, she started the Leptomeningeal Disease Private Support Community on Facebook to share information and find and connect others facing this disease.
Briana sought care at MD Anderson in Houston, TX, and tried several treatments to stave off progression as long as possible. Her journey ended on December 17, 2021 at the age of 45.
Kyle continues to run and moderate the LMD Facebook group. She has published several videos on Youtube to educate others about LMD and their journey and has advocated for awareness, education, and treatment of LMD through communications with various organizations.
Kyle spent most of her career evaluating bodily injuries and expanding her medical awareness through continued education as a licensed insurance adjuster for several companies. She resigned from her job when Briana was diagnosed with LMD and dedicated her days to Briana and searching for answers. Kyle has a BA from the University of Central Oklahoma.
