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
There was moderate certainty of evidence that voice alteration or hoarseness risk may be 2.17(1.49 to 3.17) fold higher than people receiving l-VNS. Dyspnoea risk was also 2.45 (1.07 to 5.60) times that of l-VNS receipients, although the low number of events and studies meant that the certainty of evidence was low. The risk of rebound-withdrawal symptoms, coughing, pain and paraesthesia was unclear. Diet
There is promising evidence that a ketogenic diet (high-fat, low-carbohydrate, adequate-protein) decreases the number of seizures and eliminates seizures in some; however, further research is necessary. It is a reasonable option in those who have epilepsy that is not improved with medications and for whom surgery is not an option. About 10% stay on the diet for a few years due to issues of effectiveness and tolerability. Side effects include stomach and intestinal problems in 30%, and there are long-term concerns about heart disease. Less radical diets are easier to tolerate and may be effective. It is unclear why this diet works. In people with coeliac disease or non-celiac gluten sensitivity and occipital calcifications, a gluten-free diet may decrease the frequency of seizures. Other
Avoidance therapy consists of minimizing or eliminating triggers. For example, those who are sensitive to light may have success with using a small television, avoiding video games, or wearing dark glasses. Operant-based biofeedback based on the EEG waves has some support in those who do not respond to medications.