Understanding Children's Conditions

 

In each edition of Families First, we will provide information and resources for one pediatric neurologic condition. In this issue, we focus on infantile spasms (IS). Next time, we will examine 

Batten Disease. 

What Is?
Infantile Spasms
 
Infantile spasms is an uncommon epilepsy syndrome that typically begins in the first 4 to 8 months of life and is characterized by flexion (bending and jerking) of the trunk (torso) or neck and extremities (arms and legs)
(watch a video on how to recognize the symptoms of IS). An episode can range from a subtle head jerk to a flexion that lasts for a few seconds. Most often, the spasms occur in clusters.

Please take a few minutes to watch CNF's Board President, Dr. Don Shields, provide a brief background and describe diagnosis and treatments of infantile spasms.
 
If you would like more information on IS,
click here to view a 25-minute question and answer session with Dr. Shields and
Infantile Spasms
Mini-Grants
for Families
 
The Child Neurology Foundation (CNF) announces a mini-grant program to assist families with children diagnosed with IS. While this year's deadline has passed, 
click here to learn more about this program.
 
A special IS mini-grant fund was established in memory of one very special little boy, Brendan Michael Harnett. 
Click here to read Brendan's story and donate to his fund to help support families going through the trials and triumphs of IS. 
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Whether you are a long-time friend or are new to the Child Neurology Foundation (CNF), we invite you to explore our programs and resources through our new email newsletter, Families First! For those new to the Foundation, our mission is, first and foremost, to put practical resources into the hands of families who care for a child with a neurologic condition.These children are
your friends and neighbors. They are your nieces and nephews and students and athletes. In fact, one-in-four children lives with a neurologic condition such as epilepsy, cerebral palsy, autism, or one of over 400 others. Perhaps your child has been diagnosed with a neurologic condition. If so, you are not alone.

Through our advocacy, outreach, education, and research programs, CNF is advancing the field of child neurology. With just one child neurologist for every 10,000 children with a condition, there is a critical need for more of these specialists. CNF provides summer research scholarships for first- and second-year medical students to explore the field under the mentorship of a practiced child neurologist. In addition, we are conscious that research equals advancement. We provide child neurologists, early in their careers, with support to research new and better ways to diagnose, treat, and, ultimately, cure these disorders.

Finally, we serve as an umbrella for the many unique and dedicated organizations that focus their efforts on one specific condition, striving to foster collaboration in an effort to achieve our mission. We look forward to a continued alliance with you in achieving that mission.

Tools, Trainings, Meetings, and More
Each day, we hear from parents and caregivers as they face the trials and triumphs that accompany their child's diagnosis and treatment. While resources are available from a variety of sources, the right ones for your family may be difficult to find. CNF is here to help! Please feel free to contact us at any time if your family has a specific need and doesn't know where to look. Here are just a few of the resources available to you and your family.

Find a Child Neurologist: Child neurologists are specially trained physicians who, in addition to a four-year medical school education, have also completed a five-year post-graduate training regimen consisting of two years training in pediatrics, one year in general neurology, and two years in pediatric neurology. If you have observed symptoms of a neurologic condition in your child or would like a second opinion on a current diagnosis, click here to find a child neurologist.

Parent Mentor Network: CNF has created a parent mentor network designed to pair individuals and families with other parents/caregivers who have experienced similar challenges with Infantile Spasms. The goal is to have the interaction provide comfort and support, primarily from parents who have already handled what others are just beginning to process. Click here to see our mentor map and fill out the contact from to become or find a mentor.

Child Neuro Channel: CNF is proud to announce the upcoming launch of our new website dedicated entirely to helping parents and caregivers care for children with neurologic conditions. We have partnered with some of the top child neurologists in the country as well as nurses, principals, advocacy organizations, and more to provide expert advice and current resources for your benefit and use. Look for the announcement of our official launch date within the next month!
2014 Twin Cities Mardi Gras Gala
Each year, friends of CNF gather in Minnesota for an evening dedicated to raising funds for the mission of the
 Foundation. We would like to extend a big thank you to everyone who attended or supported this year's event. Your generosity helped make it an overwhelming success that raised more than $200,000 to advance the field of child neurology.
"Crave Cares" for CNF in January!
Crave restaurant sponsored the Child Neurology Foundation in January as part of their monthly "Crave Cares" initiative. Each month, Crave hand selects a local nonprofit, donating a percentage of sales to support the mission of the sponsored organization. We would like to extend our gratitude to Crave for their very generous support of our work and for their dedication to our community. We look forward to an ongoing partnership with this exemplary company. A sincere thank you to all who chose Crave as their dining destination in January. You are making a difference in the lives of the one-in-four children with a neurologic condition.
Child Neurology Foundation
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