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.
The NF Parent Guidebook is available for download at no charge.
You may also purchase a full-color, printed copy for $25 at ctf.org/store.
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
- Download the Moxie and Sparx Color Jam Coloring Book!
Movie & 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.
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.