As the President of the Board of Directors for the Koolen-de Vries Syndrome Foundation, Ashley Point plays a pivotal role in advancing the mission to educate and raise awareness about Koolen-de Vries Syndrome (KdVS), a rare genetic disorder that affects individuals and their families in...
As the President of the Board of Directors for the Koolen-de Vries Syndrome Foundation, Ashley Point plays a pivotal role in advancing the mission to educate and raise awareness about Koolen-de Vries Syndrome (KdVS), a rare genetic disorder that affects individuals and their families in profound ways. Under Ashley's leadership, the foundation is not only focused on promoting research to find effective treatments and ultimately a cure but is also dedicated to creating a supportive community for those impacted by KdVS.
Ashley’s expertise in health advocacy and nonprofit organizations has been instrumental in driving key initiatives that enhance the foundation's visibility and outreach. Through strategic networking and fundraising efforts, she has successfully mobilized resources to support vital research projects and educational programs that empower families affected by this rare disease. Her commitment to board development ensures that the foundation is equipped with a diverse and skilled team, capable of tackling the complex challenges associated with rare diseases.
In addition to her leadership role, Ashley has taken an innovative approach to storytelling as the executive producer of the short documentary "Davis Out of the Unknown." This film, created by a talented team of emerging filmmakers, serves as a powerful medium to highlight the experiences of those living with KdVS, fostering empathy and understanding within the broader community. As the documentary continues to screen at various festivals, it amplifies the foundation's mission and engages new audiences in the conversation about rare diseases. Through her multifaceted efforts, Ashley Point exemplifies a dedicated advocate for change, striving to improve the lives of individuals with Koolen-de Vries Syndrome and their families.
