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Children’s Tumor Foundation Hosts World’s Largest Neurofibromatosis Conference June 17-21 in Austin, Texas

Texas Governor Greg Abbott to Deliver Keynote Address to Joint Gathering of Patients and Researchers

The Children’s Tumor Foundation (CTF) is hosting the 2016 NF Conference/Forum, the largest worldwide meeting dedicated entirely to neurofibromatosis (NF), a genetic disorder that affects 1 in 3,000 people and causes tumors to grow throughout the body. These tumors can result in serious health issues including vision and hearing loss, learning disabilities, bone abnormalities, disabling pain and cancer. The Children’s Tumor Foundation is the leading nonprofit organization dedicated to funding research into treatments for NF, for which there currently is no cure.

The NF Forum/Conference will take place June 17-21 at the JW Marriott in Austin, Texas, and will consist of two concurrent gatherings: the NF Forum for NF patients, families, and caregivers; and the NF Conference for NF experts, researchers and clinicians. The two groups will come together on Saturday evening, June 18, for a special dinner event featuring Texas Governor Greg Abbott as the keynote speaker. Encouraged by the Governor’s personal experience, this unique event is an opportunity for all participants to share personal stories and build relationships, driven by the common goal of ending NF.

“We are moving closer to treatments for all forms of neurofibromatosis, because of the work of the Children’s Tumor Foundation,” said Governor Abbott. “It takes passionate volunteers, strong families, generous donors and dedicated scientists working together to detect, diagnose, treat and defeat diseases like NF. On behalf of all NF families in Texas, Cecilia and I offer our heartfelt thanks to each of you.”

More than 300 clinicians and researchers from around the world will convene at the NF Conference to present the latest developments in NF research and clinical care. The meeting will include seminars by NF experts, as well as high-profile keynote speakers from related disciplines such as cancer, neuroscience and genomics, working to stimulate groundbreaking ideas and build on the connections between NF and other disease areas. In addition, the Children’s Tumor Foundation will present its annual Friedrich von Recklinghausen Award to an NF expert who has made significant contributions to neurofibromatosis research or clinical care.

“The NF Conference is the key event within the international NF research community, offering a remarkable platform to stimulate collaborative research both within the study of neurofibromatosis and in often-related disciplines like cancer and neurology,” said Annette Bakker, PhD, President and Chief Scientific Officer of the Children’s Tumor Foundation. “The NF patient is always at the heart of everything we do, so it’s especially meaningful that patients and researchers will all be together in one room. And we are especially grateful and thrilled that Governor Abbott is joining us and sharing his inspiring personal story.”

The patient-focused NF Forum is taking place simultaneously at the JW Marriott Hotel, bringing NF patients together for the opportunity to learn more about NF, meet other NF families, and interact with the researchers who are working to end NF. Significantly, this means that all stakeholders in the fight against NF are present — the researchers/clinicians striving for solutions, as well as the patients who are critical partners in finding the best results. This aligns with the Foundation’s focus on creating links among all involved, so as to more efficiently identify treatments for patients.

Please visit and for complete agendas of both the NF Conference and NF Forum.



About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, learning disabilities, disfigurement, bone abnormalities, disabling pain, and cancer. NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefiting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit

Simon Vukelj
VP, Marketing and Communications
(212) 344-7568