Focus on Families
Our organization is dedicated to supporting the MPS II community with a focus on helping families of children with this rare genetic disease. With support from generous donors like you, we've been able to help many families when they needed it most. Please take the time to learn more about MPS II, our organization, and how you can get involved.
What is MPS II?
MPS II (mucopolysaccharidoses type II) is a rare genetic lysosomal storage disease. The disease was discovered in the early 1900's by physician Charles A. Hunter, thus it also being referred to as Hunter syndrome - which also inspired our organization's name. The disease primarily affects only males, with only around 2,000 people with this disease world wide.
Hunter syndrome is caused by the body's inability to produce the specific enzyme iduronate sulfatase. This enzyme helps the cells in the body remove waste, known as glycosaminoglycans (GAG), that are created naturally as part of the cells normal operation. Without this ability, the waste builds up and causes progressive damage to organs and body systems. This leads to symptoms such as coarse facial features, stiffened joints, hearing loss, poor vision, breathing difficulties, short stature, cardiac disease, and a significantly shortened lifespan. Some with MPS II will also experience cognitive regression, or are intellectually disabled.
There is no cure for this disease.
Treatment options are available to help slow down the progression of the affects of the disease. Enzyme replacement can show positive improvement in the physical affects, but the traditional delivery of this treatment - intravenous delivery - is not able to delivery the enzyme to the brain. The brain's blood barrier prevents the enzyme from passing into the brain. As a result the cognitive regression continues - and eventually for some leads to the inability to walk or move unassisted. Typically these types of treatments must be administered weekly, and the treatment themselves are extremely expensive and not always covered through insurance.
Watch this video to learn more:
About
Hope 4 Hunter
Hope 4 Hunter is an organization that was founded in 2013 by family and friends of a family of a little boy, ironically named Hunter, shortly after he was diagnosed with MPS II at the age of 2. The group was inspired to form Hope 4 Hunter to help other families with children that have MPS II.
A debilitating disease like MPS II puts a financial burden on families caring for children with the disease. Children with MPS II need constant care from multiple specialists to deal with the progression of the disease. Many times families have to travel long distances to get the care they need for their child with MPS II.
In 2014 the organization officially became a 501(c)(3) non-profit organization. Since then Hope 4 Hunter has raised thousands of dollars and in return provided thousands of dollars in family support funds to several families in need. We operate purely based on donations, either raised during events or given directly by our generous donors. The more money we can raise, the more we can help.
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We're always looking for volunteers to assist with various tasks...
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Helping At Events
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Designing Educations Materials
If you are interested in volunteering please use the Contact Us form to send us a note.