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CNF Pathways eNewsletter
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March 2017
Welcome to the Second Issue of CNF Pathways
We welcome you again because we've grown SO MUCH since last month's inaugural issue of Pathways, making this the "first" issue for many! We are thrilled that the Child Neurology Foundation network continues to expand and diversify. CNF Partners are committed to helping one another along the path that leads to the best quality of care and the highest quality of life. We proudly offer CNF Partners unique opportunities for participation and collaboration. Pathways is a platform for patient educational information, advocacy events, scholarships, and other opportunities of interest and importance. We are glad you're here!
"The block of granite which was an obstacle in the pathway of the weak becomes a stepping-stone in the pathway of the strong.” ~ Thomas Carlyle
Rare Neurological Disease Special Report
Neurology Reviews presents its third annual Rare Neurological Disease Special Report, a compendium of articles and information covering a wide range of rare neurologic diseases. CNF is committed to the awareness and education of these rare conditions as evidenced by its newly-convened RARE Child Neurology Workgroup - a collaborative workgroup with Global Genes®.
 
On page 51 (see below), you’ll find an article on Creatine Transport Deficiency Disorder, a rare disease with a neurologic component, authored by Simona Bianconi, MD, a staff clinician at the National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health. On page 50 (see below) you’ll see a graphical depiction of the CNF 2017 Program Priorities.
 
CNF is thrilled to have worked with two of our Corporate Advisory Board members - Neurology Reviews and Lumos – on the development of this important report.
Research Grants & Scholarships: April Deadlines Approaching
 
CNF has awarded over $3.5M to the research endeavors aimed at identifying treatments and cures for pediatric neurologic diseases. 2017 opportunities now available: 


CNF Neurodevelopmental Disabilities Summer Research Scholarship supports a $3,500 clinical research scholarship for a 1st or 2nd year medical student with an interest in training as a child neurologist. Due: April 1.

Child Neurology Shields Research Grant supports translational or clinical research by a child neurologist or developmental pediatrician early in his/her academic career. $100,000 grant of $50,000/year for 2 years. Due: April 15.

Pediatric Epilepsy Research Foundation (PERF) Scientific Research Grant supports clinical or basic science research by a child neurologist or developmental pediatrician early in his/her academic career. $100,000 grant of $50,000/year for 2 years. Due: April 15.
CNF Projects in Progress: Respite Care Notebook
Respite care provides invaluable support to the families and caregivers of child and youth with special needs. Having a communication tool for caregivers to use with respite care providers helps make the respite experience more personalized, safe, and enjoyable. CNF is developing a Respite Care Notebook for the child neurology community and beyond, through the generous contribution of GlaxoSmithKline. We foresee many options for distribution and promotion upon completion, including print copies and a downloadable version on the CNF website. We will work with our partners to share this resource as broadly as possible.
If you’d like to be part of Respite Care Notebook project - whether it be content review, support, or distribution - click here to note your interest by April 1.
AAN's 2017 Brain Health Fair 

April 21; 10am - 4pm; Boston. Join the American Academy of Neurology (AAN) for this FREE event connecting neurology patients, families, and caregivers affected by a brain disease, as well as students interested in brain science and the public. 
The 2017 Brain Health Fair is designed and executed by neurologists, with local and national experts, who are on hand to answer questions about the wonders of the brain. Find out about the latest research advances in multiple sclerosis, Alzheimer's and dementia, epilepsy, stroke, Parkinson's and movement disorders, pain and headache, concussion, the latest advances in child neurology, and other brain diseases.

New Toolkit from Global Genes
Our partner, Global Genes, has released a new toolkit, Building Relationships With Your Representatives. This resource provides information on how to be your own best advocate within the political spectrum. Global Genes® is one of the leading rare disease patient advocacy organizations in the world. See other RARE Toolkits.
We're all part of the child neurology community! 
Think of Pathways as your eNewsletter, too. 

Submit items of interest for consideration to appear in a future issue. 
CDC FY2016 Grant Funding Profiles Now Available
The Centers for Disease Control and Prevention (CDC) has updated the CDC Grant Funding Profiles site. Access information about CDC funding provided to health departments, universities, and other public and private agencies across the US. The data parameters, including inclusion/exclusion and categorization, are available in “About the Data” on the site. Contact CDC’s Office for State, Tribal, Local and Territorial Support with questions.
Nice to Meet You!
For our new CNF Partners, please allow us to introduce you to what we feel are CNF's recent accomplishments and contributions to the child neurology community. CNF's 2016 Flipbook is an interactive look at our programs, initiatives, and grants. Take a look and contact us with any comments.
Was this forwarded to you? Receive it directly by signing up for Pathways.
Use AmazonSmile to Support CNF
AmazonSmile donates 0.5% of the purchase price from your smile.amazon.com purchases. You'll see eligible products marked “Eligible for AmazonSmile donation” on product detail pages. Only purchases made at smile.amazon.com, (not www.amazon.com or the mobile app,) generate AmazonSmile donations for CNF. Get started!
Child Neurology Foundation | 201 Chicago Avenue #200 | Minneapolis, MN 55415

William H. Trescher, MD; President
W. Donald Shields, MD; Past President
Ann Tilton, MD; President Elect
 
If you have questions about Pathways content or about the CNF, please contact us:

Amy Brin Miller, MSN, MA; Executive Director
Stephanie Mucha, MPH; Director, Collaborative Programs & Initiatives
Allyson Eyermann; Executive Administrative Assistant

www.childneurologyfoundation.org | info@childneurologyfoundation.org 

Copyright © 2017 Child Neurology Foundation. All rights reserved.






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Child Neurology Foundation · 201 Chicago Ave · #200 · Minneapolis, MN 55415 · USA

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