Founded in 2001, after Dr. Kenneth Swaiman recognized the need to support families and children living with neurologic disorders, Child Neurology Foundation (CNF) has been connecting partners from all areas of the child neurology community, so those navigating the journey of disease diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures.
Over the years we have grown into a national nonprofit supporting hundreds of thousands of families each year through advocacy, programming and education, grants and scholarships, and one-on-one peer support.
And we have been expanding our network of patients and caregivers, volunteers and advocates, researchers and clinicians committed to helping one another along the path that leads to the best quality of care and the highest quality of life for every child.
When the COVID-19 pandemic hit in early 2020, it ushered in massive change for all of us, however the impact on children living with neurologic conditions and their families was significant. The need for access to digital resources was exacerbated as children and their families now needed technology to access almost everything, including their health care services and schooling.
Almost overnight, telehealth became a significant tool to for patients and their families to engage with their providers. Many positives came from this: children that had to wait over 9 weeks (about 2 months) to see a child neurologist were suddenly able to see their provider in less than a week from scheduling the appointment using telehealth according to a survey we conducted (Telehealth Satisfaction Survey Results).
But for many families, lack of access to high-quality broadband and/or hardware meant they could not access the same convenient care.
And the need is immense. In late 2020, Pew Research Center estimated that 59% of American families faced digital obstacles in accessing schoolwork (Vogels). If these children do not have the technological means to access the tools to continue their education, they also lack the ability to access health care digitally.
In June we are looking to launch our first-ever Digital Access Pilot Program, helping 100 low- and middle-income families get online, right here in our own backyard (Kentucky and Minnesota).
What will families get? As part of the program, we will provide new chromebooks, hotspots with a year's worth of data, and technology use training for families to access online resources, attend telehealth appointments, and connect with their communities.
We know we cannot do it alone!
So we have partnered up with PCs for People for all of our logistical needs, including the storage and distribution of hotspots and laptops.
We're working with University of Kentucky Healthcare, the Washburn Center for Children, and Courage Kenny Rehabilitation Institute to help identify children living with a neurologic condition and their families most in need at the point of care.
And we've got a dedicated team member to provide training and customer support as families look to get comfortable with new technology and getting online.
$60,000. It costs $600 to get one family online for one year, including a hotspot pre-loaded with data and a new Chromebook (at a significantly discounted rate thanks to Dell!).
To get 100 families online in June, we need your help to raise $60,000 this month.
We are hopeful because of organizations like yours. - The Robinson family
We hope you will join us in getting 100 families connected in June.
There are so many ways you can help, depending on your own comfort, including:
- Making a donation (every little bit counts!)
- Setting a goal and starting your own fundraiser right here on Just Giving
- Sharing our campaign with 2 or 3 of your close family members and friends via email, text, or social media
Thank you so much for doing life-changing work. - The Shelton family
For more information on the pilot program, visit:
www.childneurologyfoundation.org/digital-access-program
If you would like more information or are looking for other ways to get involved, please reach out to us at giving@childneurologyfoundation.org.
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