Together, Jessica, Laurel, Victoria and Karen bond and support one another in their journey with living with this rare disease.
In January 2020,these 4 young girls met for the first time. They had been socializing online for a year but were keen to meet in person, so they became the official cheerleading squad for the NF2 BioSolutions team in the Walt Disney World Marathon, and literally from all different parts of the world they were united together at the marathon starting line. During this visit, the girls had the incredible opportunity to meet in person the very talented and dedicated scientists/researchers that are fighting so hard behind the scenes in their own marathon to develop a gene therapy cure. If these researchers ever needed reminding of the importance of their work, then these four girls did just that.
Tragically, these four friends collectively have over 50 tumours, and that’s just the ones reported on MRIs. There are most likely many more tumours growing on their nervous system undetected – until they start to cause clinical problems – by which time it is often too late to prevent permanent nerve damage. Please support the research:
