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Top Geneticists and Oncologists to Gather for Children’s Tumor Foundation Annual Conference


NEW YORK, NY — Hundreds of the world’s top geneticists and oncologists will gather in Monterey Bay, CA, June 8-11 to share the latest information on one of the world’s most common—and most perplexing—genetic diseases, neurofibromatosis (NF). They will meet at the Portola Hotel for the four-day Children’s Tumor Foundation Annual NF Conference.

Since 1978, the Children’s Tumor Foundation (CTF) has led the fight against NF, a disease that can produce a number of problems including tumors on the skin and nerves, bone abnormalities, blindness, deafness, disfigurement, and cancer. CTF sponsors research and communication among scientists and doctors working on NF, provides people with NF and their families with the best, most up-to-date information available, and partners with academia and industry to bring treatments from the laboratory to the clinic. This annual NF conference is a fundamental part of this effort.

The 2013 NF Conference co-chairs are Alison Lloyd, PhD (University College London, UK) and Scott Plotkin, MD, PhD (Massachusetts General Hospital/Harvard Medical School, Boston, MA). In addition to scientific sessions presenting leading research on the molecular biology and treatment of NF, the conference offers talks on efforts to speed the progress of potential NF treatments from the science lab to the patient.

Registration and program information for the Children’s Tumor Foundation’s 2013 NF Conference is available at

The Complexity of NF

Neurofibromatosis is one of the world’s most common genetic diseases, affecting one out of every 3,000 children born worldwide, in every country and in every ethnic group. NF includes three distinct disorders (NF1, NF2, and Schwannomatosis) that affect the growth of cells in and around the nerves. These include cells that sheath some nerves (Schwann cells) and cells that give the skin its color (melanocytes).

Because of NF’s complexity, the disease produces a variety of symptoms, and the symptoms can manifest differently in different patients. This makes NF difficult to diagnose and treat. Common symptoms include light brown “café-au-lait” patches on the skin, and tumors (often small and numerous) on or under the skin—though the tumors’ locations, sizes, and other characteristics vary widely. The impact of the disease can vary from mild to severe. NF1, the most common form of neurofibromatosis, can produce enlargement of the bones, curvature of the spine, debilitating pain, tumors on the brain or spinal nerves, and learning issues. NF2 affects one out of every 25,000 people and can lead to deafness and the development of meningiomas. Schwannomatosis—rarer and less well understood than NF1 and NF2—affects about one out of every 40,000 people and often causes schwannomas to grow on nerves and debilitating pain.

Children’s Tumor Foundation Initiatives

Highlighted at this year’s NF Conference will be the Foundation’s primary research goals, which include:

• Attract pharma and biotech to the NF field via a collaborative business model actively bridging science to industry to patients.

• CTF offers an industry-level testing platform and the necessary tools to allow preclinical proof-of-concept testing of both existing molecules as well as innovative molecular mechanisms.

• CTF continues its active scouting for compounds that may benefit NF patients.

• CTF expands the necessary services to allow clinical trials.

o The NF Patient Registry will be expanded. (

o A biobank will be launched.

o Consented efficacy outcome measure development will be funded.

o The development of FDA-approved outcome measures will be explored.

o The connection to the CDMRP (Congressionally Directed Medical Research Program) clinical trials consortium will be maintained.

• The Children’s Tumor Foundation will further invest in this new business model, allowing CTF to be a partner and collaborator with academia and industry, rather than only a funder. Multiple pilots along these lines are currently ongoing. The hope is that this investment will:

o Foster collaboration between labs, with academia, with other successful foundations and organizations such as FasterCures; and

o Attract new researchers to the field and invest in data sharing efforts. A current example is the NFPC (NF Preclinical Consortium); a new initiative is Synodos (large SPORE-like proposal to tackle NF2).


To learn more about the NF Conference, please visit

Follow the Conference on social media using #NFConference and #EndNF.

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 can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. 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
Director of Communications, Children’s Tumor Foundation; 212-344-7568