The Neurofibromatosis Network is delighted to bring you our new science column, The Network Edge
, written by science writer Vanessa Merker, BS, 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.

CONTRIBUTE TO KEEP NF RESEARCH FUNDED

Every three months The Network Edge will bring you the latest research news as compiled by science writer, Vanessa Merker.  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 12, SUMMER 2016

The Network Edge Contents:
Neurofibromatosis 1
1. Learning Disabilities and Social Difficulties
   a. Clinical Trial of Lovastatin to Improve Cognition in People with NF1
   b. Understanding Social Function in Children with NF1
2. NF1 and Cancer Risk
3. Optic  Pathway Gliomas (OPGs) and Other Brain Tumors
   a. Treatment of Low-grade Gliomas with Vincristine and Carboplatin
   b. Long-term Outcomes for Children with Low-grade Gliomas
   c. Pregnancy-related Risk Factors of Brain Tumors in Children with NF1
   d. Continued Controversy: MRI Screening for Optic Pathway Gliomas
4. Malignant Peripheral Nerve Sheath Tumor (MPNST)
   a. MPNST Prognosis in People with and without NF1
   b. Differentiating Benign Neurofibroma from MPNST

Neurofibromatosis 2
5. Bevacizumab for the Treatment of NF2 Vestibular Schwannomas
   a. Clinical Trial to Improve Hearing in People with NF2 and Progressive Hearing Loss
   b. The Best Dose of Bevacizumab?
6. Mouse Models of NF2

Schwannomatosis
7. Schwannomatosis Clinical Management
   a. Medical Imaging Techniques in Schwannomatosis
   b. Unilateral Vestibular Schwannomas Occurring in Schwannomatosis

Quality of Life and NF
8. Finding Interventions to Improve Quality of Life
9. Investigating Factors That Impact Quality of Life
   a. Health-related Quality of Life for People with NF2
   b. Appearance Concerns for Adolescents and Young Adults with NF1

 

VOLUME 11, SPRING 2016

The Network Edge Contents:
1. CDMRP NFRP Update
   a. $15 Million for NF Research in 2016!
2. NF Clinical Trials
   a. Finding the Best  Measures of Response for NF1 Learning and Behavior Disabilities Treatment Trials
3. NF1 Clinical Management
   a.  Pinpointing the Role of Hormones in NF1 Tumor Growth
   b. Discovering What Makes Plexiform Tumors Bleed During Surgery
   c. Uncovering the Relationship between Diagnosis of NF1  and Risk of Diabetes
4. NF2 Clinical Management
   a. Utility of Cochlear Implants and Auditory Brainstem Implants in NF2
   b. Focus on NF2 in Childhood
5. Breast Cancer Risk in NF1
   a. Two Cases of Breast Cancer in NF1, Two Different Outcomes
6. Social Challenges and Quality of Life in Neurofibromatosis
   a. The Specificities of Learning Disabilities in NF1
   b.  Brain Size and Structure Predictive of Learning and Social Disabilities in NF1
   c. Understanding Epilepsy in NF1
   d. Of Mice and Men: The Challenge of Translating Research from Animal to Human
7. NF1 Malignant Peripheral Nerve Sheath Tumors
   a.  Expanded Uses for FDG-PET/CT Scanning in MPNST Management
8. What’s New in NF Biology?
   a. New Roles for the NF1 Gene in Normal Brain Development
   b. Shedding Light on Optic Pathway Glioma Growth
   c. A Role for Merlin Interacting Molecule MED28 in Very Early Embryonic Development
9. Schwannomatosis Update
   a. New Schwannomatosis Cell Line an Opportunity for Expanding Research
10. Heart and Blood Vessel Abnormalities in NF1
   a. High Blood Pressure in Children with NF1
   b. A New Role for the NF1 Gene in the Earliest Events of Cardiovascular Development
11. NF Genetics Update
   a. NF1 Gene Mutations: A Brief Overview
   b. Understanding Exons and the Exome in NF1
   c. Impact of Whole Gene Deletion in NF1 vs. NF2
   d. Exploring Alternatives to NF1 Genetic Testing
12. Legius Syndrome Update
   a. New Understanding of the Biology of Legius Syndrome

 

VOLUME 10, FALL 2015

The Network Edge Contents:
1. NF2 Clinical Trials
   a. Exploring Who Might Respond Best to Bevacizumab for NF2 Schwannoma Treatment
   b. Bevacizumab’s Effects on NF2 Ependymom
2. What’s New in NF1 Biology?
   a. Promising Drug for Controlling Plexiform Tumor Growth in Mice
   b. New Genes and Potential Drug Targets in NF1 
   c. A Role for the NF1 Gene in the Early Developing Nervous System
3. What’s New in NF2 Biology?
   a. Seeking New Drug Targets for Meningiomas
   b. New Insights into Merlin Protein Roles and Biology
4. NF Genetics Update
   a. Largest Study of NF1 Microdeletion Cases
   b. Exploring the Molecular Details of NF1 Gene Mutations
5. Altered Brain Function in NF1
   a. Altered Signaling in the “Resting” NF1 Brain: A Link to Intelligence
6. Social Challenges and Quality of Life in Neurofibromatosis
   a. Impact of Pain on Life Quality in Young People With NF1
   b. Assessing the Impact of Migraine in NF1
   c. No Link between Motor Skills and Language Ability in NF1
   d. More Insights into the Biology of NF1 Muscle Weakness in NF1
   e. Impact of NF1 on Quality of Life: a Perspective from Brazil
7. NF1 and the Eye: Optic Pathway Glioma and Other Features
   a. Utility of MRI for Monitoring and Early Detection of OPGs
8. Pheochromocytoma in NF1
   a. New Insights into Pheochromocytoma Biology
   b. Case Reports Highlighting Diversity of Pheochromocytoma Presentation
   c. Pheochromocytoma: A Historical Perspective
9. NF1 Learning Disabilities
   a. Comparing Approaches for Teaching Reading to Children With NF1
   b. Mouse Study Implications for Neuronal Excitability in NF1 Learning Disabilities
10. NF1 Clinical Management
   a. The Challenge of Receiving Lifetime Care for NF1
11. NF2 Clinical Management
   a. Largest Population Study to Date Identifying Predictors of Mortality in NF2
   b. New Insight into Brain Origins of NF2 Schwannomas 
   c. Potential Molecular Predictors of Schwannoma Tumor Size

 

VOLUME 9, SUMMER 2015

The Network Edge Contents:
1. NF1 Clinical Management
    a. NF1 Bony Abnormalities
    b. NF1 Malignant Peripheral Nerve Sheath Tumors
    c. NF1 and the Eye: Optic Pathway Glioma and Other Features
    d. Breast Cancer Risk in NF1
2. NF1 Learning & Development: Social Challenges in NF1
    a. Type of NF1 Gene Mutation May Dictate Impact on Learning, Other Aspects of NF1?
    b. Potential New Drug Target for Treatment of NF1-Related Learning Disabilities
    c. Understanding Loneliness in NF1
    d. Interventional Tactics to Increase Physical Activities of Children with NF1
    e. Recognizing NF1 Developmental Differences in the Early Years of Life
3. What’s New in NF1 Biology?
    a. A New Contributing Cause of NF1 Tumor Formation?
    b. Promising Findings for a MEK Inhibitor Suggest Lasting Impact of Low Doses in NF1 Tumors
    c. A Look at Adrenal Tumors in NF1
4. NF2 Clinical Management
    a. Measuring Quality of Life in NF2
5. NF2 Clinical Trials Update
    a. A Review of NF2 Therapeutic Approaches
    b. Tapering Bevacizumab Dose with Sustained Effect in NF2 Treatment

 

VOLUME 8, SPRING 2015

The Network Edge Contents:
1. NF1 Clinical Management
    a. Reporting on the Utility of an NF1 Patient Registry
    b. Revisiting NF1 By the Numbers
    c. Monitoring NF1 Dermal Neurofibromas
    d. NF1 Bony Abnormalities
    e. NF1 and Autism
    f. NF1 Malignant Peripheral Nerve Sheath Tumors
    g. NF1 and the Eye:  Optic Pathway Gliomas and Other Features

2. NF1 Learning & Development:  Social Challenges in NF1
    a. Depression in NF1
    b. How Does the Brain Regulate Impulse Control in NF1?
    c. Motor Skills Deficits in NF1
    d. A Role for the NF1 Gene in Alcohol Dependence?
3. What’s New in NF1 Biology?
    a. New Candidate Treatment Approaches for NF1 and NF2 Tumor Cells
    b. Personalized Medicine in NF1 Tumor Assessment
4. NF1 Clinical Trials Update
    a. Methylphenidate Trial for NF1-related AD(H)D
    b. Sirolimus Trials for NF1 Plexiform Tumors: An Update 
5. NF2 Clinical Management
    a. Cochlear Implants and NF2
6. What’s New in NF2 Biology?
    a. Assessing Pak Inhibitors for Meningioma Treatment
    b. Finding the Genes that Make Meningiomas Malignant
7. NF2 Clinical Trials Update
    a. Benefits and Side Effects of Bevacizumab for NF2 Tumors
8. Schwannomatosis Update
    a. Bevacizumab Shows Promise for Schwannomatosis in Single Patient Study
    b. More Progress in Understanding Gene LTZR1’s Role in Schwannomatosis
9. NF Genetics Update
    a. Looking for the ‘Second Hit’ Mutation in NF1 Dermal Neurofibromas
    b. Specific Genes Linked to Café-au-Lait Marks
10. Special Feature:  CDMRP NFRP Update

 

VOLUME 7, WINTER 2014

The Network Edge Contents:
1. NF1 Clinical Management
    a. NF1 and the occurrence of other medical conditions
    b. Headaches in NF1
    c. Imaging Technologies
    d. NF1 Diagnostic Guidelines
    e. NF1 Bony Abnormalities
    f. NF1 Malignant Peripheral Nerve Sheath Tumors

2. NF1 Learning & Development: Social Challenges in NF1
    a. Impact of NF1 on language/communication issues in early life
    b. NF1 effect on academic success in early life, impact on lifestyle in adulthood
3. What’s New in NF1 Biology?
4. NF1 Clinical Trials Update
5. NF2 Clinical Management
    a. Quality of life in NF2 helping to determine best treatment
    b. Causes of death in NF2
6. What’s New in NF2 Biology?
7. NF2 Clinical Trials Update
8. NF Genetics Update

 

VOLUME 6, FALL 2014

The Network Edge Contents:
1. NF1 Clinical Management
    a.  NF1 and the Eye: Optic Pathway Gliomas and Other Features
    b.  NF1 Bony Abnormalities
    c.  Heart and Blood Vessel Abnormalities in NF1
    d.  NF1 Malignant Peripheral Nerve Sheath Tumors
    e.  Other Clinical Features of NF1
2. NF1 Learning & Development
    a.  NF1 Learning Disabilities
    b.  Social Challenges in Neurofibromatosis
3. What’s New in NF1 Biology?

4. NF2 Clinical Management
5. What’s New in NF2 Biology
6. NF Clinical Trials Update
7. Schwannomatosis Update
8. Legius Syndrome Update

 

VOLUME 5, WINTER 2013

The Network Edge Contents:
1.  NF1 Clinical Management
     a.  NF1 and the Eye: Optic Pathway Gliomas and Other Ocular Features
     b.  NF1 Bony Abnormalities
     c.  Heart and Blood Vessel Abnormalities in NF1
     d.  NF1 Malignant Peripheral Nerve Sheath Tumors
     e.  Other Clinical Features of NF1
2.  NF1 Learning & Development
     a.  NF1 Learning Disabilities
     b.  NF1 and Autism
3.  What’s New in NF1 Biology?
4. Special Focus: Social Challenges in Neurofibromatosis (NF1 and NF2)
5.  NF2 Clinical Management
6.  What’s New in NF2 Biology?
7.  Schwannomatosis Update
8.  NF Genetics Update
9.  Special Focus: Recommendations from the REiNS Collaboration to Improve Outcome Measures for
     NF1, NF2 and Schwannomatosis Clinical Trials

 

VOLUME 4, SUMMER 2013

The Network Edge Contents:
1. NF2 Clinical Management 2. NF1 Clinical Management
3. NF1 Bony Abnormalities
4. NF1 and the Eye: Optic Pathway Gliomas and Other Ocular Features
5. Heart and Blood Vessel Abnormalities in NF1
6. NF1 Malignant Peripheral Nerve Sheath Tumors
7. NF1 Learning Disabilities
8. Altered Brain Function in NF1
9. Other Clinical Features of NF1
10. NF Genetics Update
11. What’s New in Schwannomatosis?
12. NF1 and Breast Cancer: An Update
13. What’s New in NF2 Biology?
14. What’s New in NF1 Biology?

 

VOLUME 3, SPRING 2013

The Network Edge Contents:
1. NF1 Clinical Trials
2. NF2 Clinical Trials
3. NF1 Clinical Management
4. NF2 Clinical Management
5. NF1 Learning Disabilities
6. NF1 Bony Abnormalities
7. Heart and Blood Vessel Abnormalities in NF1
8. Other Clinical Features of NF1
9. Schwannomatosis Update
10. What’s New in NF2 Biology?
11. What’s New in NF1 Biology?
12. Legius Syndrome Update

 

VOLUME 2, WINTER 2013

The Network Edge Contents:
1. CDMRP NFRP – A Critical Funder of NF Research
2. A Focus on NF1 Malignant Peripheral Nerve Sheath Tumors
3. NF2 Clinical Management Updates
4. NF1 Learning Disabilities: News from the Clinic and the Bench
5. NF1 Clinical Management Updates
6. What’s New in NF2 Biology?
7. Heart and Blood Vessel Abnormalities in NF1: New Findings
8. What’s New in NF1 Biology?
9. NF1 Bony Abnormalities Update
10. The Evolving Link Between NF and Cancer

 

VOLUME 1, FALL 2012

The Network Edge Contents:
1. Impact of the Neurofibromatosis Network on Federal NF Research Funding
2. CDMRP NFRP Clinical Trials Network Expands
3. NF1 Clinical Trials
4. NF1 Clinical Management
5. NF2 Clinical Trials
6. NF2 Clinical Management
7. NF1 Learning Disabilities
8. NF1 Bony Abnormalities
9. Schwannomatosis Update
10. Increased Breast Cancer Risk in NF1
11. Other Clinical Features of NF1
12. What’s New in NF1 Biology and Drug Targets?
13. What’s New in NF2 Biology and Drug Targets?
14. Legius Syndrome Update

 

Sign up for our email list
to stay iNFormed