• Getting the Financial
    Information You Need
  • Connecting With the Community
  • Living with Rare Epilepsy
Federal and State Icon

Getting the Financial
Information You Need

Connecting with the Community Icon

Connecting With
the Community

Living with Rare Epilepsy Icon

Living With
Rare Epilepsy

In this section…

you will find caregiver tools, as well as resources for family fun, emotional support, and genetic testing and counseling information.

Caregiver Tools

Parents and caregivers may use these forms to collect and record all vital information about patients, including patient data, medications, dosage, treatment protocol, emergency contacts, doctors/nurses, and hospital information.

Download All Tools

Here are additional
Caregiver Tools
that you may find useful:

Family Fun

These camps, theme parks, and vacation destinations are designed especially with the needs of people with disabilities and their families in mind.

Camps

The Hole in the Wall Gang Camp Logo

The Hole in the Wall Gang Camp is dedicated to providing “a different kind of healing” to seriously ill children and their families, free of charge. We are a community that celebrates the spirit of childhood, the sound of laughter, and the feeling of endless possibility.

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Epilepsy Foundation Logo

Epilepsy Foundation camps are located throughout the country. Most programs are 1 week and offer scholarships based on financial need. Contact your local Epilepsy Foundation or search on the Epilepsy & Seizures Helpline Resources page for information about a camp near you.

Learn More

Camp Blackhawk:
Week-Long
Retreat for Kids
& Teens with Epilepsy

The Epilepsy Foundation of Greater Chicago’s Camp Blackhawk offers a FREE, 1-week summer camp for kids and teens from ages 6 to 17. Campers get to experience fun activities in a fully supportive environment alongside other young people who are living with epilepsy. Campers are assigned a case manager who gets to know each child and their individual needs.

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Camp Boggy Creek Logo

Since 1996, Camp Boggy Creek has made it possible for children with serious illnesses to enjoy a camp experience in a safe, medically sound environment. Located just a short drive from Orlando, Florida, the 232-acre camp serves children ages 7 to 16 who've been diagnosed with chronic or life-threatening conditions.

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Center for Courageous Kids Logo

The Center for Courageous Kids is a nonprofit Medical Camping Facility located in Scottsville, KY, where children living with life threatening illnesses and their families can come free of charge to have fun, find respite, feel normal, and forget about their everyday struggles.

Learn More

The information provided about these organizations is from their respective websites. For complete details please visit their websites by clicking Learn More.

Vacations and Theme Parks

Give Kids the World Village Logo

Give Kids The World Village is an 84-acre, nonprofit resort in Central Florida that provides weeklong, cost-free vacations to children with critical illnesses and their families.

The Village and its community partners provide children and their families accommodations in fully furnished villas, transportation, tickets to theme parks, meals, daily entertainment, and much more.

Learn More
Morgan's Wonderland Logo

Located in San Antonio, Texas, Morgan's Wonderland provides a safe, clean, and beautiful environment free of physical and economic barriers that all individuals—regardless of age, special need, or disability—can come to and enjoy.

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Emotional and Therapeutic Support

These organizations provide assistance to people with disabilities and their families through support animals and personal mentoring.

Service Dogs

4 Paws for Ability Logo

4 Paws for Ability is a 501(c)(3) nonprofit organization that enriches the lives of children with disabilities by the training and placement of quality, task-trained service dogs to provide increased independence for the children and assistance to their families.

Learn More
Little Angels Service Dogs Logo

Little Angels Service Dogs is a 501(c)(3) nonprofit organization of trainers and volunteers who work to provide highly trained dogs to assist disabled children and adults throughout the United States.

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Paws with a Cause Logo

Paws With A Cause enhances the independence and quality of life for people with disabilities nationally through custom-trained Assistance Dogs. PAWS increases awareness of the rights and roles of Assistance Dog Teams through education and advocacy.

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Mentor Program

Child Neurology Foundation Logo

Through the Family Support and Empowerment Program, the Child Neurology Foundation offers a connection to trained and mentored Peer Support Specialists who are parents of children and adolescents with neurological conditions.

Learn More

Blog

Pieces of Me Logo

Amanda Owen is a wife, mother, sister, teacher, caretaker, leader, etc. whose "calling" in life has been to break down barriers and provide a purpose for individuals with disabilities. She started a blog to share a "piece" of herself with others—offering perspectives on inclusion and acceptance based on her real-life experiences.

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Genetic Testing and Genetic Counseling

These organizations are focused on helping people determine the possible genetic causes of neurological diseases.

Epilepsy Genetics Initiative Logo

For people with epilepsy, EGI is a place where you can have your genetic data (your exome) analyzed and reanalyzed in an effort to find the cause of your epilepsy.

Not everyone has a genetic cause of their epilepsy, but some people do. Finding the cause could one day help to find the best treatments and, ultimately, a cure.

Learn More
Beyond Batten Disease Foundation

Beyond Batten Disease Foundation was established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure.

In the fall of 2008, Beyond Batten Disease Foundation founder Craig Benson and founding director, Mark Chandler, PhD, approached National Center for Genome Resources researchers Stephen Kingsmore and Callum Bell with a challenge: to create a precise, inexpensive, genetic test capable of detecting hundreds of devastating genetic diseases, one that could be made widely available to prevent the emotional and financial consequences associated with lengthy diagnostic odysseys.

Learn More

Greenwich Biosciences Logo