Resources

Written by Dawn Laney, MS, Carol Ogg, BS and Nadia Ali, PhD

Target Audience
Ages 10-21 years

About
The teenage years are a time when teens often begin separating their thoughts, goals, and self-image from those of their parents. They begin exploring who they are and who they want to become as they enter adulthood. For people living with a chronic disease, like a lysosomal storage disease, the teen years should also include a gradual transfer of medical care responsibility from parents to the teens themselves. As you might guess, it’s a lot easier to learn to do this slowly and with a plan, rather than jumping headfirst into a fast and confusing crash course of medical needs on your 18th birthday. This workbook, Transitions: Managing Your Own Healthcare, is packed full of exercises designed to help teens figure out how much they already are managing their own healthcare and how to uncover what they still need to learn and master to successfully manage their own healthcare.

Available through Amazon.

Written by Anne Rugari

About

Just Like Me! was written to help all children understand that boys and girls with any rare disease are just like them. They may look or act different, but inside they are just kids, like them. Hopefully the book will help encourage understanding of all children who are differently-abled. Such an important life lesson!

Available through Amazon

Written by Dawn Laney, MS, Jennifer J. Propst MS, Eleanor G. Botha MS
Illustrated by Michael J. Johnson
Designer Ruth L. O'Keefe

About
Sometimes you have to look a little closer until you realize the superpowers of someone. Join Helene as she introduces her Super Pompe forces.

Available through Amazon - German or Italian

Written by Dawn Laney, MS and Stephanie Cagle
Illustrated by Michael J. Johnson

Target Audience
Families with children diagnosed with MPS

About
Sometimes the best way to learn about a tough topic is to talk to your brother (or sister). Join Greg as he tells us about the genetic conditions MPS (Mucopolysaccharidosis) and its impact on his brother.

Available through Amazon

Written by Dawn Laney, MS
Illustrated by Michael J. Johnson

Target Audience
Families with children diagnosed with Fabry disease

About
Dani’s tumbling stomach butterflies are no fun, but Fabry camp will be! Join Dani as she makes friends at Fabry camp.

Available through Amazon

Written by Deborah Katz

About
Rare Is Everywhere takes readers on a journey through the animal kingdom, revealing that grasshoppers can be pink, tigers can be white, and lobsters can be blue. It is not only a stunning picture book but also a valuable resource. All ages, and species, will enjoy this book.

Available through Amazon

Written by Dawn Laney, MS

Target Audience
Families with children and teens diagnosed with Fabry disease

About
Old and new friends living with Fabry disease join together to plan teen camp and solve a mystery

Available through Amazon

Written by Abigail Carbone
Illustrated by Jeff Pert

About
The Long Road to Fabry is a fun and informative book written by Abigail Carbone, a teenager with a rare genetic disorder. It is simple yet provides a very accurate and much needed child’s perspective of Fabry’s disease, that will appeal to both young and old.

Available through Amazon