Our Programs and Services
Our programs and services are developed to create and strengthen connections between members of the child neurology community. Our goal is that patients and their families, physicians, other healthcare providers, and advocacy and industry partners will work together to improve the lives of children with neurologic disorders so that each may reach her full potential.
Our programs focus on four key areas: advocacy, education, support, and research. Many programs address two or more of these areas. For many young patients and their caregivers, the Child Neurology Foundation means “There is help. There is hope.”
These summaries provide a comprehensive overview of our current programs and services. If you are interested in supporting one of these programs, please visit our donation page. Or, if you are from a partnering organization and would like to collaborate, please contact Stacia Grace, Director of Operations, at 952.846.7942 or email@example.com. Please check back for updates on current programs and learn about new initiatives.
Association of Child Neurology Nurses Parental Resource Book
We recognize the irreplaceable role of nursing professionals in the child neurology community and are partnering with the Association of Child Neurology Nurses (ACNN) in the development of a caregiver resource book. This resource will provide information to help caregivers prepare for a pediatric neurology clinic visit and learn more about on-going disease management. Content examples include seizure tracking, medication administration, and sample questions parents commonly ask a neurologist.
Brendan Michael Harnett Infantile Spasms Mini-Grant
The Harnett Mini-Grant was founded by Mr. Michael Harnett in January 2014 as a memorial to his nephew, Brendan Michael Harnett, who was diagnosed with infantile spasms and passed away before his first birthday. Each year during Infantile Spasms Awareness Week, one $1,000 mini-grant is awarded to a child with infantile spasms and his caregivers to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance. Learn more about Brendan and the mini-grant application process. To donate in his honor, please visit our donation page and choose his fund from the dropdown menu.
Each quarter, we publish an e-newsletter that focuses on one pediatric neurologic disorder or topic, providing an educational overview, information on current research studies, trusted resources, and support opportunities. Visit our archive page to read past editions of our newsletter.
Infantile Spasms Awareness and Education
We have partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year infantile spasms (IS) awareness and education initiative. 2015 efforts included the publication of an IS education infographic; educational videos in English & Spanish; an IS webinar with provider, caregiver, and advocate presenters; a continuing medical education opportunity for child neurologists at the annual meeting of the Child Neurology Society; the annual IS Heroes Award and Brendan Michael Harnett IS Mini-Grant; awareness booths at the Child Neurology Society and American Epilepsy Society annual meetings; and Infantile Spasms Awareness Week.
Infantile Spasms Awareness Week
A collaborative initiative sponsored by the Child Neurology Foundation and the Tuberous Sclerosis Alliance, Infantile Spasms Awareness Week (ISAW) is held annually during the first week in December. The goal of ISAW is to increase awareness and understanding of infantile spasms through the distribution of objective educational materials to providers, caregivers, and the public; the announcement of new and useful research and support initiatives; the recognition of exemplary contributions to care; and the declaration to patients and caregivers that There is help! There is hope! Visit the ISAW 2015 page.
Infantile Spasms Heroes Award
As part of ISAW, the Child Neurology Foundation awards one heroic healthcare professional and his/her medical institution — nominated by a caregiver — with the Infantile Spasms Heroes Award. The IS Heroes Award was established in 2010 to recognize a deserving healthcare professional for making a positive difference in the life of a child with infantile spasms by embodying the heroic spirit of quality, compassionate, and efficacious care during diagnosis or treatment of IS.
Neuro Developmental Disorder (NDD) Scholar
While still in its development stage, this program will offer an annual summer scholarship of $3500 to a medical student for research of neurodevelopmental disorders in child neurology.
Each year, the Child Neurology Foundation attends specific conferences of professional societies and membership organizations to promote the mission and services of the Child Neurology Foundation, carry-out program initiatives, and meet with new and established partners. 2015 conferences include the annual meeting of the Child Neurology Society (CNS) where the Foundation will staff an educational and informational booth, host a seminar outlining our Transition of Care program and accompanying consensus statement on the role of the neurologist in transitioning pediatric patients to the adult healthcare system, host an educational symposium on infantile spasms with a continuing medical education (CME) opportunity, and hold annual Corporate Advisory Board and Board of Directors meetings. Foundation staff will also attend the American Epilepsy Society (AES) annual meeting where we will carry-out Infantile Spasms Awareness Week activities (outlined above).
Since 2001, Child Neurology Foundation has awarded over 3.3 million dollars to the research endeavors of 67 young investigators, aimed at identifying treatments and cures for pediatric neurologic diseases. Read more about each grant on its respective page.
- PERF Scientific Research Grant: A $100,000 grant of $50,000 per year for two years to support clinical or basic science research by a child neurologist.
- Shields Research Grant: A $100,000 grant of $50,000 per year for two years to support translational or clinical research by a child neurologist.
- Michael SanInocencio Lennox-Gastaut Syndrome (LGS) Grant: A one-year grant of $30,000 to support basic or clinical research of LGS by a child neurologist.
Transition of Care
The Child Neurology Foundation is leading a national, interdisciplinary expert panel to define the neurologist’s role in transitioning youth with neurologic conditions into the adult healthcare system. The panel has authored a consensus paper, which addresses a significant chasm in clinical practice with less than 50% of US youth currently receiving transition services.
Additionally, a project advisory committee was formed to plan for implementation of the consensus statement’s common principles. Initial ideas include consumer education efforts and pilot studies at selected pediatric neurology clinics.
The Transitions of Care program is generously sponsored by Eisai Inc.
Webinars: Child Neurology Community Conversations from the Voices of the Provider, Caregiver, and Advocate
Twice a year, we host educational webinars that address disease-specific issues from the provider, caregiver, and advocate perspectives to provide the child neurology community with a forum for bringing partners’ perspectives together. Pediatric neurologists provide clinical considerations related to the disease-specific issue, caregivers share their experiences and advice, and organizational advocates highlight current resources available to help support both clinicians and families. View past webinars.
This website was created primarily to serve as an educational portal for patients and caregivers. It also allows our advocacy and industry partners to get the word out about their own programs, educational materials, research studies, and many other initiatives aimed at serving the child neurology community. While there are many viable and trustworthy disease-specific organizations, the Child Neurology Foundation is in a unique position to serve the overarching needs of all members of the community. This website serves as a home within the child neurology community where members can be certain that the information they receive is credible, as all content is vetted by child neurologists. While a work in progress, our Disorder Directory allows visitors to learn from the experts with disease-specific articles written for caregivers by leading child neurologists. Accompanied by stories from families living with the same disorders as well as trusted resources, this growing directory serves as a starting point for caregivers seeking direction and guidance related to their child’s unique situation.