NF Parent Guidebook

About

A spiral notebook with a picture of a family. The NF Parent Guidebook is a home-based, 160-page resource designed to provide support and education to you and your family. It will guide you through your journey with NF and associated learning, behavioral, or social challenges. The NF Parent Guidebook is a place to find ideas, strategies, and suggestions that will help you understand and meet the needs of your family and child.

Click HERE to download a flyer to share with anyone who might be interested in the NF Parent Guidebook. (Also available in French and. Spanish)

The NF Parent Guidebook is available at the links below in French and Spanish, with translation coming soon in Mandarin, German, and Italian.

Download the Guidebook

The NF Parent Guidebook is available for download at no charge.

CLICK HERE to order a free print copy from our partners at Mele Printing.

Each of the Guidebook’s 13 sections covers an important topic related to NF and learning challenges. To download select sections, click on a title below.

The Impact of Neurofibromatosis on the Family
What is Neurofibromatosis Type 1
Talking With Your Pediatrician
Executive Function Difficulties in People With Neurofibromatosis
Strengthening Family Relationships – Part 1
Strengthening Family Relationships – Part 2
Strengthening Family Relationships – Part 3
Strengthening Family Relationships – Part 4
Social Skills Deficits
Bridging the Gap Between Home and School
Educational Rights for Your Child – Part 1
Educational Rights for Your Child – Part 2
Resilience, Transition to Adulthood, and Future Success

Moxie & Sparx

Moxie and Sparx will be your guides as your family completes the NF Parent Guidebook. They will also lead you through some fun activities for you to engage in with your child.

Download the Moxie and Sparx Color Jam Coloring Book in English or Spanish.

Download our NF1 comic, Moxie & Sparx Explain NF1 in English, Spanish or French.

HI, I'm Moxie!

I’m a courageous bear who wants to help you strengthen family relationships. I’m a champion for teamwork and communication. I believe that strong families are at the heart of the NF journey. I want you to remember that you are not alone – you have each other, your healthcare team, and the NF community supporting you!

HI, I'm Sparx!

I’m a clever, quick-witted fox who wants to spark your love for lifelong learning. I believe that families who take the time to learn about NF are empowered throughout the NF journey. I know that each family is different. That’s why it’s important to be creative and be patient – you’ll discover what works best for you and your family. And remember, don’t be afraid to ask questions!

Acknowledgements

The NF Parent Guidebook is the product of a multi-year CTF research grant given to Maria Acosta, MD, of the Children’s National Health System. Other contributors to the Guidebook include Beth Kaplanek, RN, BSN, and Karin Walsh, PsyD.

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