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Live Posts from the Paris NF Conference

By November 6, 2018January 17th, 2024NF Conference

This year’s Joint Global Neurofibromoatosis Conference is a global event attracting more than 800 participants worldwide across a wide range of scientific disciplines, from research and clinical backgrounds, all focused on improving outcomes for patients with neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) and schwannomatosis. Together with NTAP and REiNS, the Children’s Tumor Foundation sponsored this year’s conference, and organized it with the European NF Group and Association Neurofibromatoses et Recklinghausen.

It was standing room only in most sessions, and we were there posting live highlights from each day:

Day 1: November 2, 2018

For anyone up bright and early in the USA, we’re off and running at the Joint Global NF Conference in Paris, with a pre-Conference session on cutaneous neurofibromas, sponsored by NTAP, REiNS and CTF. As you can see, the room is packed – standing room only. Follow along on social media for updates this weekend on the world’s largest NF scientific conference in history.

Day 2: November 3, 2018

Day Two of the Global NF Conference started with a tremendous presentation by Dr. Andrea Gross of the NIH on the ongoing success of the MEK inhibitor clinical trial (pictured here). With over 850 people in attendance, the Conference was told not just of positive clinical statistics and research figures, but also the very real story (and video) of an NF hero who prior to the clinical trial could barely lift his arms over his head, but now is able to do so. We’ve said it before and will say it again: tumors are shrinking and lives are improving. Your support is making this happen! Following Dr. Gross’ presentation, the keynotes of today’s meetings are focused on “Epigenetics: One Genome, Multiple Phenotypes”; “Schwann Cell Biology” and the plenary topics will cover a number of talks on epigenetics; schwann cells and neurofibromas; surgery in NF; and the psychosocial impact of NF. Many topics being discussed – so as to help ALL patients with NF.

Day 3: November 4, 2018

We’re streaming LIVE from #NFPARIS2018 as our NF Ambassador McKinnon Galloway provides the NF Patient perspective to attendees of the Global NF Conference. We’re bringing together patients + families + caregivers + researchers + clinicians + doctors + pharma to make sure we move as fast as possible to #ENDNF.


The energy and excitement just keep growing at the Global NF Conference! Rooms are packed, important work is being shared, and researchers are taking lots of photos of the presentation screens to bring the findings back with them (more fun than reading abstract books for sure!). Day 3 highlights include sessions on “NF2 and Schwannomatosis: State of the Art”; “Genotype/Phenotype in NF1”; “Glioma: In/Out of NF”; “Functional Genetics and Classification of Variants”; “Learning Disabilities”; “MPNST”; “Mutations in Other Cancers” and a session hosted by Astra Zeneca called “Are we MEKing Progress?” Here are some photos of just a few of the key talks, such as Dr. Scott Plotkin talking about the promise of brigatinib for NF2 patients (this came out of CTF’s Synodos consortium, and more news on this tomorrow); Dr. Brigitte Widemann on the promise and progress of MEK; Dr. Gareth Evans leading spirited sessions on both NF1 and NF2; and Dr. Ludwine Messiaen on remarkable findings on genotype/phenotype in NF1. The common thread of these advancements: all were initially funded and made possible by the Children’s Tumor Foundation (with your support!). From the NF Preclinical Consortium that led to the promise of MEK, to Synodos for NF2 leading to a potential new drug candidate, and to proving phenotypes may correlate to genotypes – all are essential advancements in our quest to #ENDNF.

Day 4: November 5, 2018

The dynamic pace of the Global NF Conference continues unabated, with a number of key presentations and findings today. Big news for NF2: the therapeutic Brigatinib is showing progress in animal model testing, and will continue to be analyzed as a potential option for NF2 patients. This promising candidate is a direct result of CTF’s Synodos for NF2 collaborative that brought together ‘dream teams’ from 12 academic centers to openly work together and share data. This further proves the Synodos concept, and is very exciting news. More to come on this in the near future. Other important topics discussed today included a series of discussions and presentations on pain for all forms of NF; gene therapy options and advances for NF; MEK success not just in NF1 but also NF2 (also a promising Synodos result); and a riveting discussion with a panel of well-known NF experts analyzing and debating treatment options for specific cases of NF1, NF2, and schwannomatosis. Summaries will come after the Conference, but this is how we’re going to solve NF – put the best minds in a room, share experiences and learnings, and provide options for patients. No more “watch and wait”, but “here’s what we can do”.

Day 5: November 6, 2018

Today we say ‘au revoir’ to the Global NF Conference, as well as the beautiful city of Paris. The Conference highlight today was a series of talks called “NF: Past, Present, and Future”, with reflections on how NF research has grown over the years, from initial meetings of just a handful of scientists, to the over 850 in attendance this past week. Major advancements – with names like bevacizumab and brigatinib and selumetinib (MEK) – offer more than just hope, they are true milestones in our race to find effective treatments for all forms of NF. Discussions this week centered around treatments – surgery vs radiation vs. chemo – but also (importantly) on quality of life issues: pain, itching, learning disabilities and more. All aspects of the lives of NF patients were discussed, and NF patients (or their advocates, parents, caregivers) were themselves on panels, ensuring that the voice of the NF patient is heard. Conference co-chair Dr. Pierre Wolkenstein closed the conference today by saying that the speech given by CTF NF Ambassador McKinnon Galloway the other day was among the most passionate he had ever heard. We agree. CTF Board Chair Rick Horvitz told participants that “you all labor every day to try to find cures and treatments for us, and for that we are eternally grateful”. We agree. And CTF President Dr. Annette Bakker reminds us that “We fight all forms of NF – NF1, NF2, schwannomatosis. But NF cannot divide us. We will defeat NF – together”. We agree with this too. We all know that NF patients are true heroes in every sense of the word, and today we must say, after witnessing discussion, debate, passion, and yes, some good humor thrown in this past week, that NF scientists, researchers, doctors, clinicians, nurses, etc., are true heroes in this fight too. We offer our deepest gratitude to all of them, whether they were in Paris or not. In the coming weeks and months we will be offering recaps and learnings from this week’s activities, but we’ll close for today with this: the City of Paris is known as the ‘City of Light’. How perfect to have been here this week, as we at the Children’s Tumor Foundation promise to continue to ‘Shine a Light on NF’ each and every day, until we come to the day, that we finally #ENDNF.


Click here to view the 2018 NF Conference agenda.

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