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The Neurofibromatosis Network is excited to bring back our science column, The Network Edge!
written by science writer Justin T. Jordan, MD, MPH, providing a summary of recent highlights from NF research and clinical trials. The Network, through advocacy on Capitol Hill and direct funding of research, plays a central role in progress toward a cure.
Every three months The Network Edge will bring you the latest research news as compiled by science writer, Justin T. Jordan. The goal is to keep you abreast of advancements in treatment and clinical care for all forms of NF.
The Network Edge is presented in bite-sized pieces, allowing you to easily find and focus on those topics of most interest to you, whether it is NF1 learning disabilities studies, NF2 clinical trial updates or schwannomatosis news.
Volume 15: Winter, 2017
Highlights
- NF1 Quality of Life and Mental Health
- Optic Pathway Gliomas in NF1
- Malignant Peripheral Nerve Sheath Tumors
- NF2 Malignancy Potential
- NF2 symptoms
- Schwannomatosis Update
- Communication with Medical Teams
Volume 14: Spring, 2017
Highlights
- NF1 Clinical Trials
- NF1 Brain Tumors
- NF2 Clinical Management
- Schwannomatosis Update
- Quality of Life
Volume 13: Fall, 2016
Highlights
- Congressional Update
- NF Clinical Trials
- NF1 Biology
- NF2 Clinical Management
- NF2 Biology
- Schwannomatosis Update
- Quality of Life
Volume 12: Summer, 2016
Highlights
- NF1 Learning Disabilities
- NF1 and Cancer
- NF1 Brain Tumors
- NF2 Vestibular Schwannomas
- Schwannomatosis Update
- Quality of Life
Volume 11: Spring, 2016
Highlights
- Congressional Update
- NF1 Learning Disabilities
- NF1 Tumors
- NF2
- Schwannomatosis
- Breast Cancer in NF1
- New Roles for the NF1 Gene
Volume 10: Fall, 2015
Highlights
- New insights into how Bevacizumab is used to treat NF2 schwannoma and ependymoma tumors.
- How a new UK Registry facilitates exploration of the causes and predictors of mortality in NF2.
- Impact of migraine and pain on NF1 quality of life.
- An analysis of teaching approaches to improve reading skills in children with NF1.
- How NF2 schwannomas arise in the brain, and their possible relevance to treatment decisions.
- NF2 biology updates: new drug candidates for meningiomas, understanding merlin biology.
- The value of early life monitoring for NF1 optic pathway gliomas using MRI.
Volume 9: Summer, 2015
Highlights
- A new mouse model of NF1 dystrophic scoliosis: A new mouse model will allow closer study and drug testing.
- Malignant peripheral nerve sheath tumors: New drug targets show promise; studies examine a “personalized medicine” approach to finding the right drug treatments.
- Increased age-specific breast cancer risk in NF1: A British population study suggests women with NF1 may be at greatest increased risk of breast cancer in their 30’s.
- NF1 learning disabilities: A new candidate drug target is identified; studies examine impact of NF1 mutation type.
- Recognizing early life cognitive differences in NF1: Differences in brain function in children with NF1 may be seen in the first months of life, before they are recognized by parents.
- Quality of life in NF2: Complications of NF can prevent people from engaging with the world. New studies examine how challenges may be identified and addressed.
- NF2 Drug Treatments: Bevacizumab remains most promising; studies suggest tapering down the dose to reduce side effects while maintaining the drug’s tumor-treating effects.
Volume 8: Spring, 2015
Highlights
- A new NF1 patient registry highlights the value of patient-reported data.
- rhBMP-2, a candidate drug for promoting bone healing shows promise in NF1 mouse models.
- In NF1, understanding autism spectrum disorder and finding evidence for depression risk.
- SUZ12, a new genetic regulator of MPNSTs and candidate drug target; testing new MPNST drugs.
- Methylphenidate shows promise for treatment of AD(H)D in NF1.
- Children with NF1 have compromised motor skills, not necessarily due to attention deficits.
- Implicating the NF1 gene in alcohol dependence.
- A closer look at Sirolimus treatment of plexiform tumors – do people respond differently to this?
- What makes meningiomas become malignant? New candidate treatments for these NF2 tumors.
- Hope comes from a promising single-case trial of Bevacizumab to treat schwannomatosis.
Volume 7: December 2014
Highlights
- Survey of insurance claims shows NF1 may be linked to higher risk of other medical conditions.
- Candidate drugs to improve bone mineralization and treat pseudarthrosis in NF1 are presented; sunshine exposure improves Vitamin D levels in NF1 but still falls short.
- From MPNST biology, a new candidate drug and two new drug targets emerge.
- Impact of NF1 on communication, academic success in early life, and later lifestyle is examined.
- In NF1 clinical trial, drug Sirolimus doesn’t shrink plexiform tumors, but it may help with NF1-related learning and behavioral challenges.
- Bevacizumab shows promise in clinical trial for treatment of the rare NF1 high-grade glioma.
- New mouse model of NF2 represents human condition, opens the door to new research.
- Quality of life impact is a key consideration in selecting NF2 treatment regimes.
Volume 6: Fall, 2014
Highlights
- Understanding aneurysms and stenosis in NF1.
- Exploring Methylphenidate (Ritalin) for treatment of attention deficits in NF1.
- Real-life impact of NF1 learning disabilities on individuals and families.
- Interpreting MRI hyperintensities in the NF1 and the NF2 brain.
- New candidate drug targets and treatment approaches for NF1 and NF2.
- Surgical decision making in NF2 clinical management.
- Updates on clinical trial and drug treatment reports for NF1 and NF2.
- A new schwannomatosis gene is identified.
- Legius Syndrome updates; possible genetic links to leukemia.
Volume 5: Fall, 2013
Highlights
- Social challenges for those with NF1 and NF2.
- A new look at life expectancy in NF1 and NF2.
- Unique considerations of seizure and epilepsy management in NF1.
- NF1 learning disabilities – clinical trials update; new modes of early detection; a possible link with sleep disorders.
- Updates on monitoring for MPNSTs; developing targeted drugs for these tumors.
- New NF2 candidate drug targets.
- The search for NF1-related gene mutations beyond the NF1 gene.
- A definitive link between autism and NF1.
Volume 4: Summer, 2013
Highlights
- New biological markers to better predict development of MPNSTs.
- Imaging brain structure: a new approach to measuring NF1 vision loss in NF1?
- A potentially helpful role for radiotherapy following NF2 meningioma surgery.
- Café-au-lait marks may carry secrets of NF1 biology.
- Children with NF1 have reduced brain blood flow.
- New NF2 drug therapy shows promise.
- Growth factor TGF-beta contributes to NF1 bone abnormalities.
- Special considerations for surgical management of very large NF1 plexiform tumors.
- Sleep disturbances in NF1.
- A new mouse model for studying NF1 learning disabilities.
- Early screening for BRCA mutations in women with NF1 to detect breast cancer risk.
- Multiple-spinal-menigioma disease, a new genetic condition defined.
Volume 3: Spring, 2013
Highlights
- Evaluating progress in the CDMRP NF Clinical Trial Consortium.
- Bevacizumab is not effective in shrinking NF2 meningiomas.
- Women with NF1: challenges faced in pregnancy.
- Young adults with NF1 often overlook the importance of their clinical care.
- New quality of life surveys for those with NF1 and NF2 could help detect health concerns.
- High blood pressure and vascular health issues may affect children with NF1.
- Breakthrough findings uncover the basis of nerve damage and pain in NF2.
- International consensus update on schwannomatosis diagnosis and clinical care.
- NF2 diagnosis in infancy may predict poorest outlook.
- Update on genetic testing for Legius Syndrome.
Volume 2: Winter, 2013
Highlights
- CDMRP NFRP – A Critical Funder of NF Research.
- A Focus on NF1 Malignant Peripheral Nerve Sheath Tumors.
- NF2 Clinical Management Updates.
- NF1 Learning Disabilities: News from the Clinic and the Bench.
- NF1 Clinical Management Updates.
- What’s New in NF2 Biology?
- Heart and Blood Vessel Abnormalities in NF1: New Findings.
- What’s New in NF1 Biology?
- NF1 Bony Abnormalities Update.
- The Evolving Link Between NF and Cancer.
Volume 1: Fall, 2012
Highlights
- Impact of the Neurofibromatosis Network on Federal NF Research Funding.
- CDMRP NFRP Clinical Trials Network Expands.
- NF1 Clinical Trials.
- NF1 Clinical Management.
- NF2 Clinical Trials.
- NF2 Clinical Management.
- NF1 Learning Disabilities.
- NF1 Bony Abnormalities.
- Schwannomatosis Update.
- Increased Breast Cancer Risk in NF1.
- Other Clinical Features of NF1.
- What’s New in NF1 Biology and Drug Targets?
- What’s New in NF2 Biology and Drug Targets?
- Legius Syndrome Update.
TOOLS & RESOURCES
RESOURCES
- Webinars for those impacted by NF
- Understanding Neurofibromatosis (ebook)
- Understanding Neurofibromatosis Type 2 (ebook)
In Their Own Words