“The future depends on what we do in the present.”
– Mahatma Gandhi

As advocates within the child neurology community, we are all striving to not only support individual children and their caregivers but also to impact the healthcare system and society at large. With 1 in 6 children living with a neurologic condition, public education and awareness is critical. Together, our efforts are multiplied. Our voices are louder. Our hearts, heads, and hands are braver, wiser, and stronger. Whether you represent a business or corporation, a disease-specific advocacy or support group, or are here with personal motivations to make a difference for these children, we recognize your valued contribution to the child neurology community and look forward to joining forces to improve their lives that each may reach her full potential.

Programs and Services

While there are many viable and trustworthy disease-specific organizations that serve children and families affected by specific diagnoses, the Child Neurology Foundation is in a unique position to serve the overarching needs of all members of the child neurology community and seeks to fill the unmet needs not addressed by these disease-specific groups. Additionally, many pediatric neurologic disorders are very rare — many with less than 2500 cases worldwide, some with just 1 or 2 known cases in all of history — and may not have a support group or established advocacy effort of their own. We receive emails from these caregivers regularly; they often feel lost and alone. While we connect them with established rare disease organizations, we also stand ready to advocate for them directly under the umbrella of pediatric neurologic disorders. Please explore our programs and services to learn more.

Partnerships

Collaboration is at the core of our mission. If you are interested in partnering on a specific project or simply want to connect and formalize a partnership, visit our Partners page to learn more or contact the Child Neurology Foundation at info@childneurologyfoundation.org

Have You Heard

Our Have you Heard page is a resource for news, events, and opportunities not only from the Child Neurology Foundation but also from our partners. If you or your organization have an upcoming educational or awareness event, support opportunity, or would like to share other information within the child neurology community, please contact us. Pending review, we can assist with promotion and distribution through our growing network of partners and on our own platform.

Corporate Advisory Board

Child Neurology Foundation’s Corporate Advisory Board (CAB) is all about creating a community of support. We partner with local businesses and corporations to further their philanthropic goals, increase their visibility within the community, and further the Foundation’s mission. Our partners combine employee engagement, in-kind donations, and financial support to achieve the greatest impact for the children we serve. Visit our Corporate Advisory Board page to learn more about the exclusive benefits we offer our CAB members, explore membership levels, and learn about our current CAB members.

Research and Clinical Trials

We achieve our mission by creating connections in the child neurology community. The connection between research and advocacy, researchers and advocates is critical to advancements in treatments and cures. For young patients and their families, both research and advocacy mean There is help! There is hope! For those who have dedicated their lives to research, advocacy efforts are critical to securing the vital funding that supports their endeavors. Providing this support to young investigators is key to our advocacy efforts. We also share research grants supported by our partners Please see our Provider/Research/Medical Student landing page to learn more.

Where there is research for the advancement of treatments and cures, there are accompanying clinical trials. Educational information on clinical trials can be found on our Patient Participation in Clinical Trials page. Clinical trials sponsored by our partners and vetted by our review committee can be found on our Clinical Trials Directory page as well as in our Disorder Directory under the “resources” tabs of specific disorders.

If you have information about a current pediatric neurologic study that you would like added to our Clinical Trials Directory page, please click here to send us your trial title and clinicaltrials.gov link. Child Neurology Foundation can help with promotion and dissemination of your study information, so we encourage young investigators to contact us.

Disorder Directory

Patients and caregivers navigating the path of diagnosis and/or treatment often convey their feelings of loneliness and uncertainty. To address those concerns, we have partnered with healthcare providers, advocates, and industry partners to create a child neurology Disorder Directory. It is intended to serve as a road map whereby patients and caregivers can connect to the appropriate partners within the child neurology community who can assist in addressing their needs no matter where they are on their journey. Our aim is threefold: 1. To provide credible educational information about specific diseases through articles written by child neurologists for patients and caregivers; 2. To share stories from families whose children have the same diagnosis; 3. To provide links to disease-specific advocacy and support groups where additional support and resources are available. As more disease-specific articles are authored by child neurologists, the directory will grow to serve as an education and information clearinghouse for the child neurology community.

So, we welcome you to explore this Disorder Directory, ask questions and provide feedback. We encourage you to link these pages to your organization’s website and share them with your constituents. We’ve done our best to research and vet the resources included on these pages. Have we missed a trustworthy resource or organization? Please do not hesitate to share it with us. We’ll have our experts review it, and we will add it in the resources section as appropriate.