Leukodystrophy Awareness Month and Just Like Me, Too!
September is Leukodystrophy Awareness Month! A leukodystrophy is a type of disease that causes degeneration of the myelin, or "white matter" of the brain. Every individual requires healthy production of myelin for speed and accuracy of nerve impulses within the brain. Without a healthy myelin sheath, your nerves can’t send and receive signals properly.
Krabbe disease is one specific type of leukodystrophy. Today, there are more than 50 different types of leukodystrophies identified. Some more commonly known leukodystrophies are Metachromatic leukodystrophy (MLD), Niemann-Pick disease, Canavan disease, Vanishing White Matter, Alexander disease, and Krabbe disease.
This year, Neurogene is proud to sponsor KrabbeConnect’s Leukodystrophy Awareness Campaign to help support families directly impacted by Krabbe disease. It takes just a few minutes to get your FREE copy of, “Just Like Me, Too!”, written by Anne Rugari, VP of KrabbeConnect.
Orders are being taken and processed NOW for our Krabbe families to have in time for Leukodystrophy Awareness Month in September. Get your copy soon as quantities are limited. Please note, this campaign is restricted to residents of the United States and Canada due to shipping restrictions.
More About the Book
“Just Like Me, Too!” was written to be used as a teaching tool to help children understand and accept others who are differently-abled. The story was inspired by Gina Rugari, who was born with Krabbe disease. She used a wheelchair to move and a communication device to assist her in everyday living. However, she was just like all boys and girls, in that she had hopes, dreams, and goals. Gina is also the illustrator of “Just Like Me, Too!”, which showcases her original artwork, living life through her lens.
“Just Like Me, Too!” is an easy, quick read, encouraging readers to recognize and celebrate the unique differences of all people. This book also works to encourage inclusivity and acceptance of those who don’t look, act, or do things the way everyone else does. Anne Rugari, author and mom to Gina, states, “No matter who we are, inside our hearts, we are more alike than we are different.”
Neurogene’s mission is to improve patient outcomes by advancing multiple genetic medicines for as many neurological disorders for which we may make a tangible, life-altering difference. We envision a world in which all families have access to genetic medicines, even if the disorder is exceedingly rare. To learn more about their work, visit Neurogene.com today!
Neurogene is committed to working with the patients who have received a Krabbe disease diagnosis.
**Don’t have a family member impacted by Krabbe disease, no problem! You can obtain a copy of “Just Like Me, Too!” by visiting annerugari.com. All orders through annerugari.com will receive an autographed book direct from the author**