Indiana will start screening in 2020. Parents of newborns with a diagnosis of Krabbe disease can access online community support and resources below. Treatment
Although there is no known cure for Krabbe disease, bone marrow transplantation or hematopoietic stem cell transplantation (HSCT) has been shown to benefit cases early in the course of the disease. Generally, treatment for the disorder is symptomatic and supportive. Physical therapy may help maintain or increase muscle tone and circulation.A 15-year study on the developmental outcomes of children with Krabbe disease who underwent HSCT in the first seven weeks after birth found that patients have a better prognosis for both lifespan and functionality, with a slower progression of the disease. Even symptomatic individuals with later-onset Krabbe disease may benefit from HSCT if diagnosed early enough. Umbilical-cord blood is typically used as the source for the transplant stem cells. Clinical trials for gene therapy are currently enrolling patients. Management
Symptom management can be particularly difficult for individuals with infantile onset, as symptoms tend to progress rapidly. Because there is no treatment for Krabbe disease, management of the condition is typically supportive and aimed at alleviating symptoms. Frequent evaluation is encouraged in order to anticipate the onset of, and preparation for, certain symptoms. Physical therapy can help to alleviate motor difficulties and increase strength, mobility, and flexibility.Gastrostomy tubes are used to circumvent feeding difficulties and prevent aspiration. A simultaneous gastrostomy tube insertion and Nissen fundoplication procedure is commonly performed to prevent the need for a secondary surgical procedure.
They created Hunters Hope - a foundation that seeks to advance Newborn Screening, research and treatments, and provides support to families of leukodystrophy children.Family advocacy is a critical part of advancing newborn screening, and many Krabbe families have made significant advocacy progress in their states.As an example, Cove Ellis is a child from Georgia, United States who was diagnosed with the disease in early 2016. Ellis family, along with her community, has worked to raise awareness of the disease and helped pass "Coves Law", which provides parents the option to have prenatal screening for the disease, which can, potentially, save the child from the morbidity and mortality of Krabbe disease. Other animals
Krabbe disease is found in mice may also be found in cats and in dogs, particularly the West Highland White Terriers and Cairn Terriers. See also
Maria Luisa Escolar
The Myelin Project
The Stennis Foundation
KrabbeConnect
The Legacy of Angels Foundation
Hunters Hope Foundation

References
This article incorporates public domain text from the United States National Library of Medicine and the National Institute of Neurological Disorders and Stroke. External links
GeneReviews/NCBI/NIH/UW entry on Krabbe disease
OMIM entries on Krabbe disease