About the School Outreach Program

We believe that it is important for educators and other school professionals to know about CMT, given the importance of physical activity and services such as occupational therapy for kids growing up with the disease.  We also support inclusive education, which means that our classrooms today are filled with a wide variety of strengths and needs, abilities and challenges.  This calls for an increased understanding of disability and difference on the part of students.

To achieve this understanding, HNF sponsors the School Outreach Program.  This Program involves School Presentations, which are scheduled as often as possible nationwide and are free of charge.  We also offer a Teacher’s Guide which provides 50+ pages of information and activities to assist educators in utilizing Arlene On the Scene in the classroom, within a standard Language Arts program, with extensions into social studies and counseling programs as well.  Connections to Curriculum Standards are included.

We’d love to come to a school near you!  Please email  Carol if you’re interested and put in the subject line your school name and city.

Watch NBC news video of our presentation to Kizirian School in Providence, RI.

The Story Behind the Book

Arlene on the Scene was written to raise much-needed awareness about the most common hereditary neuropathy, Charcot-Marie-Tooth, or CMT. Although 2.6 million people live with CMT, too many people have never heard of it.

That is about to change, thanks to Arlene. The character and book was inspired by Grace Caldarone, a young girl living with CMT and facing each day with optimism, courage, and humor.

Arlene On the Scene is one of the many initiatives from The Hereditary Neuropathy Foundation aimed at increasing CMT awareness.  One hundred percent of the proceeds from book sales is being donated to help people living with CMT.

We have found that Arlene On the Scene provides the perfect launching pad to open discussions on two important topics: CMT and disability in general. Through our School Outreach Program we offer educational materials and a live author presentation aimed at increasing understanding of disability in a fun, interactive way.