CHILD NEUROLOGY EDUCATION AND RESEARCH FOUNDATION

RISE Family Grant offer $1,000 grants to families living with a pediatric neurologic condition to assist with expenses not covered by insurance.

Rising Tides Grants are $10,000 grants to support our peers and help keep every aspect of the advocacy ecosystem healthy.

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.

The Child Neurology Foundation (CNF) connects partners from all areas of the child neurology community to optimally offer education and support to children living with neurologic conditions and their families.

Members of the CNF Partners e-mail list comprise a multidisciplinary group committed to helping one another along the path that leads to the best quality of care and the highest quality of life.

CNF Partners receive the weekly eNewsletters—a way to share patient educational information, advocacy events, scholarships, grants, and more.

See the archives for past issues and information about submission. Contact [email protected] with any questions.

Infantile spasms (IS) is a rare, but serious form of epilepsy occurring in children, usually under one year of age.

In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year Infantile Spasms (IS) Awareness and Education Initiative. IS efforts are showcased during Infantile Spasms Awareness Week (ISAW), which is held annually during the first week in December. Learn more

To further expand the IS initiative, CNF convened two forums in 2016 that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise awareness for infantile spasms. The group now includes over 30 national and international entities and has been dubbed the Infantile Action Network (ISAN).

Brendan Harnett Infantile Spasms Mini-Grant: Each year during ISAW, 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.

CNF has always worked to respond to the greatest needs of the child neurology community. At this time, the greatest need is to provide children and families with neurologic conditions with the support that they need to care for their children in their homes during a time of social isolation. In response to the COVID-19 pandemic, CNF has pivoted to create targeted resources and mini-grants to support children and families in our community during these unprecedented times.

As the pandemic evolves, CNF will continue to respond to the greatest needs to help serve the child neurology community. We believe that rising tides lift all boats, and that by working to uplift individuals and organizations across the child neurology landscape, that we will get through this together. Standing in our value of transparency, CNF will continue to provide regular updates to our community via our blog, social media channels (linked on side menu), and newsletters.

Due to the pandemic and the rise of telehealth, in 2021 we launched our digital access pilot program to help 100 families in Kentucky and Minnesota get online and get access to the digital resources, telehealth services and virtual communities of support needed to help reduce isolation and get the best quality of care possible.

Since 2001, Child Neurology Foundation has awarded over $4.1 million dollars to the research endeavors of over 70 young investigators, aimed at identifying treatments and cures for pediatric neurologic diseases. Read more about each grant on its respective page.

PERF Elterman 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.
PERF 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.

The Child Neurology Foundation announces the availability of (1) one summer clinical research scholarship for a first- or second-year U.S. or Canadian medical student who has an interest in training as a child neurologist.

The award will be made for clinical research focused in the field of neurodevelopmental disabilities in children to be conducted under the direction of a child neurology/NDD subspecialist during the summer break. Selected applicant will receive a $3,500 scholarship to support his or her research project.

The Child Neurology Foundation’s (CNF) Board of Directors identified Management of Disruptive and Harmful Behavior in Epilepsy and Autism Spectrum Disorder as the focus of its 2019 education initiative. Due to the nature of need, we have continued to add our behavioral support and education resources over the years.

CNF’s mission to serve as a collaborative center of education and support of children and families living with neurologic conditions ideally situates us to explore the existing chasm between healthcare provider’s ability to offer behavior management support guidance, and families’ desires to have access to the best treatment available for their children.

Every year, the Child Neurology Foundation’s (CNF) Board of Directors identifies an important Education Initiative that impacts the entire child neurology community. In 2020, this Education Initiative is Shortening the Diagnostic Odyssey and our board has decided to dedicate two years to this topic.

There are many reasons why Shortening the Diagnostic Odyssey was chosen as our 2020 Education Initiative.

Here are just a few of those reasons:

400 million people suffer from a rare disease globally – that is greater than the population of the US (1).
The average length of time from symptom onset to an accurate diagnosis is of a rare disease is 5 years (2).
80% of rare diseases are caused by a faulty gene (3).
The Child Neurology Foundation believes it is critical to get to a diagnosis sooner so that parents, caregivers, and physicians can begin the process of finding possible treatments and make more informed decisions about next steps in the care of the child.

In the year ahead, CNF will:

Collect data about the journey through diagnosis from families and clinicians.
Hold an educational symposium for clinicians at the Child Neurology Society (CNS) annual meeting.
Create an educational webinar for caregivers and families.
Develop a genetic testing 101 info sheet for caregivers and families
There are many important steps in the process of coming to a diagnosis, and the first step is for caregivers and doctors to collaborate. The Child Neurology Foundation Annual Symposium at the CNS Annual Meeting will include experts who will discuss the best way for families to monitor and communicate symptoms, as well as how child neurologists can best support children and families through the process of testing, assessments, referral to specialists, genetic counseling, and a treatment plan before, during and after diagnosis.

We will also educate child neurologists on the tools available to accelerate diagnosis timelines, as well as resources to learn more about rare diseases, treatment guidelines and appropriate referrals.

As part of our caregiver education, we will help families to have a more complete understanding of things like: the different pieces that go into receiving a diagnosis; what genetic testing means and does not mean; questions to ask their physician about the diagnostic process; and how to interpret answers.

Transitioning from the pediatric to adult health care system should be expected for all patients living with a neurologic condition. However, for some youth and young adults, transitioning from their child neurologist to an adult neurologist can prove challenging. Unfortunately, the necessary supports and services to make the transition successful are often fragmented or missing.

CNF describes the goal of its Transition of Care Program as helping to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems. It is one of CNF’s most diverse and comprehensive programs.

To address that goal, CNF offers a wealth of information and resources for both providers (eg, practice guidelines, implementation tools) and youth/families (eg, videos, helpful links, and tools to start the transition conversation with your provider), many of which are developed with the support of our partners who also believe in the importance of transitions within the neurology population.

Additionally, a project advisory committee was formed to plan for implementation of the consensus statement’s common principles under subcommittees that are examining clinical tools, caregiver education, and quality initiatives.

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.

Thanks to support from our numerous volunteer child neurologists, we have been updating our Disorder Directory to allow visitors to learn from 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.

CNF has also developed a Respite Care Notebook–a communication tool for caregivers to use with respite care providers. The Notebook includes medical and condition-specific information, but with a “person-first” feel – leading with the child’s strengths, likes and dislikes. The Notebook is available as a downloadable file on the CNF website.

Peer Support offers families a free connection with an experienced, compassionate Peer Support Specialist. Our program was created so that no parent or caregiver in the child neurology community ever walks alone.

A Peer Support Specialist helps children and families living with a neurologic condition from diagnosis, treatment, and beyond. Along with relational support, CNF Peer Support Specialists empower families by sharing information and helpful resources.

In the many years that CNF has been working in the child neurology community, one of the main issues that we hear time and again, is that there must be a better way for patients and physicians to connect with each other and make better use of the short time they have together during visits. Parents are often stressed and looking for answers to a long list of questions. Physicians have limited time with each patient and might be trying to protect patients and families from negative or discouraging information. Caregivers, patients, and physicians can have different goals for care, and all this combined leads to frustration.

In 2018, CNF began working with Digital Health Solutions to start addressing this issue. We have an opportunity to use efficient and innovative technology to facilitate communication between patients, care givers, and providers. This is where CHICA comes in.

What is CHICA?

CHICA stands for Child Health Improvement through Computer Automation. It’s a web-based clinical decision support system that works with a physician’s current Electronic Health Record System to help coordinate patient visits. When the patient enters the waiting room, they fill out a normal digital intake form, but CHICA asks additional questions that will then be put into an algorithm. Based on the patient and caregiver responses, the algorithm then populates questions and prompts on the provider’s end, so that both caregiver and provider are on the same page from the moment the patient enters the doctor’s office. CHICA also suggests patient educational handouts based on vetted clinical guidelines and measures. This system provides an efficient and minimally invasive way to prompt physicians about evidence-based processes specifically tailored to each patient’s needs.

In 2018, with the support of Greenwich Biosciences, DHS and CNF put CHICA to the test in child neurology by creating a CHICA-SUDEP module. SUDEP is Sudden Unexpected Death in Epilepsy. When we surveyed families, we learned that, “a majority of families wanted to discuss their child’s risk of SUDEP with their pediatric neurologists, but instead were more likely to go to a peer or the internet. We learned that historically, providers were less willing to discuss these topics due to their worry of causing increased anxiety for the caregiver,” said Amy Brin, CNF Executive Director/CEO. “Clearly, these were missed opportunities.”

In reality this conversation was only happening 20% of the time. With our 2018 pilot project, we saw in increase from 22% to 50% in just a 6-week period. This type of change is unprecedented in SUDEP.

Now we want to bring the CHICA model to the rest of child neurology.

What is CHICA-CN?

The Child Neurology Foundation and Digital Health Solutions (DHS) are working together over the next three years to build a set of child neurology modules to work with CHICA, called CHICA-CN (Child Health Improvement through Computer Automation System – Child Neurology).

Within the healthcare system, physicians work with evidence-based clinical guidelines that provide them with guidance for how to treat specific issues and conditions. For the sets of clinical guidelines that already exist within child neurology, we will build algorithms that work within CHICA to coordinate visits between families and physicians. In clinical areas where a guideline doesn’t already exist; the expert panel will assess if there is enough supporting literature to create a clinical consensus algorithm to address a gap in care.

Why is CHICA-CN being built?

CHICA has been used in primary care clinics in the Indianapolis area for 15 years and has produced incredibly successful results. Based on these results, and the success that we experienced with the CHICA-SUDEP trial in 2018, we can have an incredible impact on patient care in child neurology. The Child Neurology Foundation is uniquely positioned at the intersection between patients and families, physicians, researchers, and industry partners, to bring these groups together and drive a project like this forward. We like to think of CHICA-CN as the child neurology moonshot. It will truly be a gamechanger in the way that physicians and families collaborate on care for our kids.