2019 NF Conference
18 September 2019
2019 NF Conference
The Children's Tumor Foundation holds its 2019 Neurofibromatosis Conference this weekend, commencing 21st of September 2019, at the Hyatt Regency in San Francisco. Lasting until Tuesday, the conference will play host to a number of the world's leading authorities on NF, including a number of our Medical Advisory Board. Amongst the headline speakers will be Professor Gareth Evans, Chair, Nerve Tumours UK Medical Advisory Board, Professor Ros Ferner and Dr Shruti Garg.
We continue to work very closely with the Children's Tumor Foundation on joint initiatives to raise awareness of Neurofibromatosis around the globe.
Professor Rosalie Ferner is the first to speak on the 22nd of September about Diagnostics and Imaging at 13:45 US time (21:45 UK time).
Professor Gareth Evans is then set to speak the following day at 14:00 US Time (22:00 UK time) about the Genetics of NF2 and Schwannomatosis
Dr Shruti Garg is then the last of our UK based speakers who will be speaking later that day about Clinical Science Platform Presentations at 17:15 US time (1:15 UK time).
Professor Gareth Evans, Professor Ros Ferner and Dr Shruti Garg will all be in attendance



Each day, headed by a keynote speaker, will offer up a range of sessions in which various important topics and research will be discussed amongst numerous medical professionals.
- Day 1 will be centred around clinical care, the natural history of NF, and the psychosocial issues surrounding NF patients.
- Day 2 will be largely focused on cancer, including the predictions of future prevention and curing of cancer, the diagnostics and imaging of cancer, and the mechanisms of NF2 loss-driven Tumorigenesis.
- Day 3 will look at the advances in Neurobiology and Neuropathic pain, metabolic rewiring in NF2 Mutant Tumors, Cutaneous Neurofibromas, Genetics of NF2 and Schwannomatosis, and the targeting of gene editing and gene therapy for NF
- Day 4, the final day will be a much shorter day in which there will be a lengthy discussion on animal models before the second "Hackathon Outcome" is discussed
Hackathon:
"The Children’s Tumor Foundation (CTF), the Neurofibromatosis Therapeutic Acceleration Program (NTAP), Sage Bionetworks, and the Silicon Valley AI group (SVAI) are excited to announce the second Neurofibromatosis (NF) hackathon that will be held in San Francisco in concomitance with the 2019 CTF Patient Forum and NF Conference. After the first NF2 hackathon organized by Onno Faber in 2017, the this new event will focus on analyzing diverse datasets including genomic, drug screening, drug-target association, imaging, and other data for all three conditions of NF (NF1, NF2, Schwannomatosis).
The goals of the NF Hackathon are: 1) to make use of the data that our researchers and scientists have already produced, 2) to incentivize data sharing as a powerful practice that will allow researchers to move at a faster pace and create new insights, and 3) to create innovative collaborations between diverse disciplines.
The hackathon is going to be collaborative in nature, with teams working on one or multiple tracks in a collaborative spirit, but still competing to find the best answer to the questions with the support of NF experts and technology experts to act as mentors and guides. The teams will assemble on the first day and will have 48 hours to present their work to a committee that will judge their work.
The winning teams will be presenting their findings during this session."
For more information on the conference itself then please visit the website by following the link below:
Filter News

Sian & Connor’s story
Sian & Connor describe the invaluable support from NTUK during her pregnancy with baby Reuben
Read More
Anita, aka Fat Lady Slim, is running the London Marathon for NTUK
Anita is fundraising on behalf of niece Sophie & great-niece Lexie who have NF2 by running the London Marathon
Read More
Neurofibromatosis 1 in the 21st Century
Professor Rosalie Ferner delivers key speech “Neurofibromatosis 1 in the 21st Century” to the BPNA 2022 Annual Conference
Read More_370x280_800_600_s_c1.jpg)
The International Rare Disease Showcase 1st – 3rd February 2022
The International Showcase is a unique & important event, with interactive sessions taking place from 1st-3rd February 2022
Read More
Grace’s NF1 story - Nothing stops me
Grace tells us how her NF1 hasn't stopped her from being active and achieving her goals
Read More
Mia’s NF1 story
Bridie & Warren describe their 17 month old daughter Mia's diagnosis with NF1
Read More
Richard & Diana’s 1,000,000 metre new rowing challenge
Diana & Richard have taken on a 1,000,000 metre rowing challenge in 100 days to raise funds & awareness
Read More
A Message from our Charity Director
A message from Karen, our Charity Director, on looking forward to a special 2022
Read More
Childhood Neurological Conditions Survey Part 2
Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis
Read More