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New CTF Resources: Talking to Your Child About NF1 and Super Emerson

By September 17, 2024September 27th, 2024Awareness, Featured, Featured EU, NF1, Tools for Kids

The Children’s Tumor Foundation is excited to introduce two new resources for families affected by neurofibromatosis type 1 (NF1), a genetic condition that causes tumors to form on the nerves.

Talking to your child about their NF1 diagnosis can be challenging, and many parents may feel unsure about how to begin. These resources have been created to guide parents and caregivers, drawing on research into how families communicate about genetic conditions, including NF1.

Cover of a guidebook titled "Talking to Your Child About NF1: A Guidebook for Parents" by the Children's Tumor Foundation, depicting a family with two adults, two children, a baby, and two pets.

Talking to Your Child About NF1 is a comprehensive guide that helps caregivers decide what and how to share with their child about their condition. It can be used on its own or together with the children’s resource designed to complement it.

Link for Parent Resource – English
Link for Parent Resource – Spanish
Link for Parent Resource – French

 

 

Cover of "Super Emerson: A Book About NF1 For Kids," featuring a child in a green cape and bunny slippers with a superhero poster on the wall. Published by the Children's Tumor Foundation.Super Emerson is a children’s book that introduces NF1 through the story of a young child with the condition. Before sharing it, caregivers should review the content to ensure it feels appropriate for their child. The book features engaging sections like “Sparx Facts” and “More from Moxie,” which provide additional insights and activities for kids.

Link for Super Emerson – English
Link for Super Emerson – Spanish
Link for Super Emerson – French

Both resources are available for free in English, Spanish, and French at the Children’s Tumor Foundation Resource Library on ctf.org/education.

 

Webinar

Ahead of launching these resources, CTF held a webinar with the team behind their creation to discuss the science involved, offer practical tips for families, and explain how these resources came to be.

Resource Creation Process

The creation of these resources began when Ryan Brown-Ezell, a genetic counseling student at the University of Alabama at Birmingham (UAB), took an interest in how children are informed about genetic conditions like NF1. Building on earlier work by Madeleine Franchi, MS, LCGC, who had surveyed and interviewed parents about the challenges of discussing NF1 with their children, Ryan and her team set out to design a tool to support families.

The development team included experts in genetic counseling and bibliotherapy (the use of books in therapy), including Ashley Cannon, PhD, MS, CGC, Heather Radtke, MS, CGC, and Lynn Holt, MS, CGC, and Georgina Schlub, FHGSA, PhD. The team used insights from parent interviews, research on children’s understanding of genetics, and feedback from caregivers to create scientifically grounded and practically useful resources.

The Children’s Tumor Foundation team and reviewers included child psychologist Dr. Jennifer Janusz, VP of Communications Vanessa Younger, and Director of Research Education Sarah Lees, along with NF1 parents Stacey DeCillis and Connie Sorman, who provided additional input to ensure the final products addressed real-world concerns.

Illustrator Liz Latham brought Super Emerson to life with a relatable, gender- and race-neutral character who reflects the diverse experiences of children with NF1. The character’s family structure is also non-traditional, allowing more readers to see themselves in the story.

Once illustrations were finalized, Susanne Preinfalk handled the layout and design. Both resources were reviewed by CTF and UAB to ensure they could be shared in print and digital formats and remain accessible to families for free.

Ryan is now a pediatric genetic counselor at the University of Florida’s Duran Genetics Clinic, where she continues to help families navigate genetic disclosures. She hopes to continue writing books to support children with genetic conditions.

Resource References   

  1. Friedman JM. Neurofibromatosis 1. 1998 Oct 2 [Updated 2022 Apr 21]. In: Adam MP, Mirzaa GM, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2023. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1109/
  2. Franchi M, Radtke HB, Lewis AM, Moss I, Cofield SS, Cannon A. Parent perspectives on disclosing a pediatric neurofibromatosis type 1 diagnosis. J Genet Couns. 2023 May 15. doi: 10.1002/jgc4.1719. Epub ahead of print. PMID: 37183616.
  3. Hand, H. (n.d.). Helping your child cope with neurofibromatosis. https://www.nfmidwest.org/wp-content/uploads/2021/04/Helping-Your-Child-Cope-With-Neurofibromatosis.pdf
  4. LeRoy, B. S., Veach, P. M. C., & Callanan, N. P. (Eds.). (2021). Genetic counseling practice: Advanced concepts and skills.
  5. Wiley Blackwell. Metcalfe, A., Plumridge, G., Coad, J., Shanks, A., & Gill, P. (2011). Caregivers’ and children’s communication about genetic risk: A qualitative study, learning from families’ experiences. European Journal of Human Genetics, 19(6), 640–646. https://doi.org/10.1038/ejhg.2010.258
  6. Miller, D. T., Freedenberg, D., Schorry, E., Ullrich, N. J., Viskochil, D., Korf, B. R., Council on Genetics, & American College of Medical Genetics and Genomics. (2018). Health supervision for children with neurofibromatosis. Pediatric Clinical Practice Guidelines & Policies. https://doi.org/10.1542/9781610021494-part05-health_supervision5
  7. Plumridge, G., Metcalfe, A., Coad, J., & Gill, P. (2009). Family communication about genetic risk information: Particular issues for Duchenne Muscular Dystrophy. American Journal of Medical Genetics Part A, 152A(5), 1225–1232. https://doi.org/10.1002/ajmg.a.33364
  8. Schlub, G. M., Crook, A., Barlow Stewart, K., Fleming, J., Kirk, J., Tucker, K., & Greening, S. (2021). Helping young children understand inherited cancer predisposition syndromes using bibliotherapy. Journal of Genetic Counseling, 30(4), 1119–1132. https://doi.org/10.1002/jgc4.1396
  9. Stuttgen, K., McCague, A., Bollinger, J., Dvoskin, R., & Mathews, D. (2020). Whether, when, and how to communicate genetic risk to minors: ‘I wanted more information but I think they were scared I couldn’t handle it.’ Journal of Genetic Counseling, 30(1), 237–245. https://doi.org/10.1002/jgc4.1314
  10. Tell your child about the diagnosis – the association for X&Y chromosome variations. The Association for X and Y Chromosome Variations. (2022, September 9). Retrieved March 27, 2023, from https://genetic.org/im-caregiveraffected-child/tell-child-diagnosis/
  11. Yau, N. (2020, March 20). Wheel of emotional words, in case you’re having trouble finding the words these days. FlowingData. Retrieved March 27, 2023, from https://flowingdata.com/2020/03/20/wheel-of-emotional-words/
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