https://news.nf.synapse.org/ Updates, funding opportunities, and research spotlights from the NF Open Science Initiative. en-us https://news.nf.synapse.org/posts/three-recipients-of-sorc-travel-grants-reflect-on-2023-nf-conference https://news.nf.synapse.org/posts/three-recipients-of-sorc-travel-grants-reflect-on-2023-nf-conference Thu, 17 Aug 2023 15:15:05 GMT by Sasha Scott, PhD, Sage Bionetworks The Children’s Tumor Foundation, in partnership with the Schwannomatosis Open Research Collaborative (SORC), granted three travel awards to deserving researchers so that they could a...Blog PostFeaturedData AnalysisResearcher Spotlight https://news.nf.synapse.org/posts/expanding-horizons-three-awardees-to-attend-nf-conference-with-sorc-travel-grants https://news.nf.synapse.org/posts/expanding-horizons-three-awardees-to-attend-nf-conference-with-sorc-travel-grants Tue, 11 Apr 2023 18:58:02 GMT The Schwannomatosis Open Research Collaborative (SORC) is an innovative, community-based research project aimed at utilizing publicly available data to uncover new scientific insights into the rare and understudied genet...Blog PostFundingNF News https://news.nf.synapse.org/posts/postdoctoral-position-available-in-the-mcclatchey-lab https://news.nf.synapse.org/posts/postdoctoral-position-available-in-the-mcclatchey-lab Wed, 25 Jan 2023 18:47:17 GMT The McClatchey lab is seeking postdoctoral research fellows who are enthusiastic, motivated, and like to think outside the box to join our NF2/schwannomatosis team. In collaboration with the Giovannini (UCLA) and Stott (...Blog PostOpportunityPostdoc https://news.nf.synapse.org/posts/apply-now-2023-young-investigator-award https://news.nf.synapse.org/posts/apply-now-2023-young-investigator-award Wed, 07 Dec 2022 20:11:48 GMT Children's Tumor Foundation is now accepting Letters of Intent (LOI) for the 2023 Young Investigator Award (YIA) program. The deadline to submit an LOI is January 4, 2023 5:00pm ET. Children's Tumor Foundation has also a...Blog Post https://news.nf.synapse.org/posts/hack4nf-wining-projects-announced https://news.nf.synapse.org/posts/hack4nf-wining-projects-announced Wed, 16 Nov 2022 20:23:46 GMT This press release was originally published on the Children's Tumor Foundation Blog on November 16, 2022. Hackathon Leveraged Genomic Datasets to Develop Drug Targets, Predict Variants and Correctly Classify Tumors for N...Press Release https://news.nf.synapse.org/posts/applications-2023-fellowship https://news.nf.synapse.org/posts/applications-2023-fellowship Tue, 01 Nov 2022 22:55:38 GMT The Doris Duke Charitable Foundation is now accepting applications for the 2023 Physician Scientist Fellowship competition. Applications are due January 13, 2023, 3pm ET. Grants of $220,000 over two years ($100,000 direc...Blog PostFunding https://news.nf.synapse.org/posts/nf1-project-seeks-study-participants https://news.nf.synapse.org/posts/nf1-project-seeks-study-participants Wed, 26 Oct 2022 17:02:45 GMT A group of Australian researchers are doing a study to learn more about cutaneous neurofibromas (benign skin lumps) in adults with NF1. They aim to understand why some people are mildly affected and other people have man...Blog Post https://news.nf.synapse.org/posts/big-shift-in-u-s-policy-regarding-open-access-of-scientific-research https://news.nf.synapse.org/posts/big-shift-in-u-s-policy-regarding-open-access-of-scientific-research Tue, 18 Oct 2022 00:00:35 GMT The Biden Administration announced a new requirement, to be implemented as soon as the end of 2025, that the results of all scientific research be made available publicly as soon as that research is published. This chang...Blog PostFeaturedData SharingNF NewsOpen Access https://news.nf.synapse.org/briefs/standards-rfc-2022 https://news.nf.synapse.org/briefs/standards-rfc-2022 Fri, 02 Sep 2022 00:00:00 GMT This document describes data types and formats that should be shared by the Neurofibromatosis (NF) research community for the NF Data Portal.FeaturedData Standards https://news.nf.synapse.org/posts/2022-nf-conference-overview https://news.nf.synapse.org/posts/2022-nf-conference-overview Thu, 14 Jul 2022 17:37:34 GMT The NF-OSI team from Sage Bionetworks presented three different open-science focused projects at the 2022 NF Conference in Philadelphia, PA between June 18-21. Didn’t attend the conference? Learn more about these present...Blog PostPublication https://news.nf.synapse.org/posts/ntap-rfa-cutaneous-neurofibromas https://news.nf.synapse.org/posts/ntap-rfa-cutaneous-neurofibromas Thu, 28 Apr 2022 15:33:44 GMT The Neurofibromatosis Therapeutic Acceleration Program (NTAP) (www.n-tap.org) is a philanthropic research entity based at Johns Hopkins University School of Medicine dedicated to the discovery of therapeutics for the per...Blog PostFunding https://news.nf.synapse.org/posts/researcher-spotlight-astrid-behnert https://news.nf.synapse.org/posts/researcher-spotlight-astrid-behnert Mon, 21 Mar 2022 22:00:59 GMT What is your name, title and institutional affiliation? Astrid Behnert Department of Pediatrics, Benioff Children’s Hospital University of California, San Francisco What is your role, ie what do you do? I’m a clinician-s...Blog PostResearcher Spotlight https://news.nf.synapse.org/posts/researcher-spotlight-taylor-sundby https://news.nf.synapse.org/posts/researcher-spotlight-taylor-sundby Sun, 27 Feb 2022 20:00:38 GMT What is your name, title and institutional affiliation? R. Taylor Sundby, MD Advanced Clinical Fellow Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health What is your role, ie what do you...Blog PostResearcher Spotlight https://news.nf.synapse.org/posts/researcher-spotlight-sara-gosline https://news.nf.synapse.org/posts/researcher-spotlight-sara-gosline Mon, 10 Jan 2022 21:00:46 GMT Sara Gosline. (Photography by Scott Eklund/Red Box Pictures) What is your name, title and institutional affiliation? Sara Gosline, Ph.D. Computational Biologist, Pacific Northwest National Laboratory What is your role, i...Blog PostResearcher Spotlight https://news.nf.synapse.org/posts/researcher-spotlight-gelareh-zadeh https://news.nf.synapse.org/posts/researcher-spotlight-gelareh-zadeh Wed, 08 Dec 2021 21:00:47 GMT Dr. Gelareh Zadeh, a neuroscientist at UHN and UofT, has been appointed the first female chair of neurosurgery in Canada. Photographed in her home on August 12, 2020. Kate Dockeray/Globe and Mail What is your name, title...Blog PostResearcher Spotlight https://news.nf.synapse.org/posts/upcoming-talks-ctf-gff https://news.nf.synapse.org/posts/upcoming-talks-ctf-gff Fri, 08 Oct 2021 15:29:51 GMT Wondering what's new in NF research? The NF research community is sharing their knowledge with the world. Check out the following events. INFER: Masterclasses in NF from Children's Tumor Foundation Europe October 6th - D...Blog Post https://news.nf.synapse.org/posts/researcher-spotlight-david-a-largaespada-ph-d https://news.nf.synapse.org/posts/researcher-spotlight-david-a-largaespada-ph-d Mon, 16 Aug 2021 22:00:36 GMT What is your name, title and institutional affiliation? David A. Largaespada, Ph.D., Professor, Masonic Cancer Center, University of Minnesota What is your role, i.e., what do you do? I am the Associate Director for Basi...Blog PostResearcher Spotlight https://news.nf.synapse.org/posts/four-new-nf-osi-posters-and-presentations-from-the-2021-nf-conference https://news.nf.synapse.org/posts/four-new-nf-osi-posters-and-presentations-from-the-2021-nf-conference Mon, 26 Jul 2021 22:05:15 GMT At the 2021 Virtual NF Conference, hosted by the Children's Tumor Foundation, three members of the NF-OSI from Sage Bionetworks presented posters. Senior Scientist Robert Allaway presented a poster reflecting on the new...Blog Post https://news.nf.synapse.org/posts/researcher-spotlight-dr-angela-hirbe https://news.nf.synapse.org/posts/researcher-spotlight-dr-angela-hirbe Wed, 23 Jun 2021 21:52:05 GMT What is your name, title and institutional affiliation? Angela Hirbe, M.D., Ph.D. Assistant Professor of Medicine and Pediatrics Director, Adult Neurofibromatosis Clinical Program Division of Oncology, Sarcoma Section Wa...Blog PostResearcher Spotlight https://news.nf.synapse.org/posts/new-docs-site-for-the-nf-data-portal-now-live https://news.nf.synapse.org/posts/new-docs-site-for-the-nf-data-portal-now-live Thu, 20 May 2021 17:29:58 GMT We want the NF Data Portal to be as open and easy to use as possible. To that end, we just launched a new docs site full of documentation to help you learn how to find, share, and use data on the NF Data Portal. Some hig...Blog PostNF NewsRelease https://news.nf.synapse.org/posts/nf-annotation-app-available-in-beta https://news.nf.synapse.org/posts/nf-annotation-app-available-in-beta Tue, 30 Mar 2021 15:46:08 GMT We’re thrilled to announce that the NF Annotation App - NF Data Curator - is now available in beta. NF-OSI aims to increase collaboration, fuel important discoveries, make rare disease data more accessible to the communi...Blog PostNF NewsRelease https://news.nf.synapse.org/posts/gff-gti-applications-open https://news.nf.synapse.org/posts/gff-gti-applications-open Fri, 19 Feb 2021 16:24:57 GMT The Gilbert Family Foundation’s (GFF) Gene Therapy Initiative is accepting proposals for high-impact research on gene therapy strategies aimed at addressing the loss of neurofibromin 1 (NF1) gene function in neurofibroma...Blog PostFundingNF News https://news.nf.synapse.org/posts/ddirr-applications-open https://news.nf.synapse.org/posts/ddirr-applications-open Fri, 13 Nov 2020 23:07:59 GMT Applications are now open for the Children's Tumor Foundation's (CTF) 2021 cycle of Drug Discovery Initiative Registered Reports (DDIRR) award program, a program to fund early stage testing of candidate drug therapies fo...Blog PostFundingNF News https://news.nf.synapse.org/posts/hack-for-nf-2020 https://news.nf.synapse.org/posts/hack-for-nf-2020 Tue, 22 Sep 2020 18:30:31 GMT Do you want to advance the field of neurofibromatosis (NF) and rare diseases? Hack for NF, and be part of developing solutions to end rare diseases! Hackers present rare disease solutions at the 2019 NF Hackathon in San...Blog PostHack for NF 2020HackathonNF News https://news.nf.synapse.org/posts/francis-s-collins-scholars https://news.nf.synapse.org/posts/francis-s-collins-scholars Wed, 16 Sep 2020 21:44:26 GMT In 1990, Dr. Francis S. Collins led the team that discovered the NF1 gene. Now it's your turn to join the team that discovers the cure. The Francis S. Collins Scholars Program in Neurofibromatosis Clinical & Translationa...Blog PostFrancis S Collins ScholarsFundingNF News https://news.nf.synapse.org/posts/summer-2020-updates https://news.nf.synapse.org/posts/summer-2020-updates Mon, 08 Jun 2020 22:42:46 GMT NF Data Portal: major updates We’re thrilled to announce the re-release of the NF Data Portal. New features include the ability to explore studies, data, and more with interactive plots; the ability to share your search...NewsletterNF News https://news.nf.synapse.org/posts/spring-2020-update https://news.nf.synapse.org/posts/spring-2020-update Sun, 26 Apr 2020 22:47:57 GMT Photo courtesy of National Cancer Institute. Therapeutic highlight: MEK inhibitor approved! After several years of innovative preclinical research and intensive clinical study, selumetinib was granted FDA approval for us...NewsletterNF News https://news.nf.synapse.org/posts/uncovering-therapeutic-strategies-for-neurofibromatosis-type-1 https://news.nf.synapse.org/posts/uncovering-therapeutic-strategies-for-neurofibromatosis-type-1 Wed, 26 Feb 2020 05:47:00 GMT By Jineta Banerjee and Robert Allaway Drug discovery studies are challenging to conduct for rare diseases because there often isn’t enough relevant biological data. Small, or underpowered, datasets hinder the effectivene...Blog PostNF NewsPublication https://news.nf.synapse.org/posts/winter-2019-updates https://news.nf.synapse.org/posts/winter-2019-updates Wed, 18 Dec 2019 22:56:23 GMT 2nd NF Hackathon results The NF-OSI ran the 2nd ever NF Hackathon in San Francisco this past September. During this collaborative scientific event, participants explored genomic, drug screening, imaging, and other data f...NewsletterNF News https://news.nf.synapse.org/posts/fall-2019-updates https://news.nf.synapse.org/posts/fall-2019-updates Thu, 29 Aug 2019 23:58:36 GMT 2nd NF Hackathon: Sept. 13-15 in San Francisco Reminder: A collaborative research event is happening in San Francisco on September 13-15, 2019, one week prior to the 2019 NF Conference. Following in the footsteps of the...NewsletterNF News https://news.nf.synapse.org/posts/summer-2019-updates https://news.nf.synapse.org/posts/summer-2019-updates Tue, 25 Jun 2019 00:02:18 GMT New datasets available on the NF Data Portal The Synodos for NF2 project, led by Drs. Wade Clapp, James Gusella, Scott Plotkin, and Jaishri Blakeley, recently had its final data release. There are several new publicly av...NewsletterNF News https://news.nf.synapse.org/posts/nerve-fibers-in-skin-involved-in-initiating-neurofibromas-in-nf1 https://news.nf.synapse.org/posts/nerve-fibers-in-skin-involved-in-initiating-neurofibromas-in-nf1 Mon, 20 May 2019 05:39:41 GMT Contact Information: Frank L. Rice, PhD President, CEO and Chief Scientist Integrated Tissue Dynamics, LLC 7 University Place, Suite B236 Rensselaer, NY 12144 frankrice@intidyn.com www.INTiDYN.com \[Partner Press Release...Press ReleaseNF NewsNF1 https://news.nf.synapse.org/posts/spring-2019-updates https://news.nf.synapse.org/posts/spring-2019-updates Sun, 07 Apr 2019 22:26:20 GMT The NF Open Science Initiative has had a busy start to 2019. A few updates: New NF1 and NF2-related datasets now available on the NF Data Portal This quarter marks the release of several new datasets that are now availab...NewsletterNF News https://news.nf.synapse.org/posts/new-research-tools-available-in-the-search-for-therapies-for-nf1 https://news.nf.synapse.org/posts/new-research-tools-available-in-the-search-for-therapies-for-nf1 Fri, 15 Jun 2018 05:10:49 GMT Read the full article in Scientific Data (June 12, 2018). A collaboration of the Neurofibromatosis Therapy Acceleration Program (NTAP), together with Sage Bionetworks, Johns Hopkins, NCATS and the University of Florida P...Press ReleaseNF NewsNF1