Sanfilippo Hope Initiative
Jarod and Caleb are brothers who suffer from an ultra-rare disease called Sanfilippo Syndrome. We are determined to find a cure for them!
Sanfilippo Hope Initiative
The Sanfilippo Hope Initiative is a United States-based nonprofit organization dedicated to supporting individuals with Sanfilippo Syndrome, a rare and devastating genetic disorder. This initiative focuses on raising awareness about the disease, providing assistance to affected families, and promoting research towards finding a cure.
Mission
The organization's primary mission is centered around three key objectives:
- Support to Families: Offering assistance to families coping with Sanfilippo Syndrome.
- Awareness and Research: Raising awareness about the disease and funding research into potential treatments.
- Cure Development: Ultimately striving to find a cure for Sanfilippo Syndrome.
Background
Sanfilippo Syndrome, also known as Mucopolysaccharidosis type III, is characterized by severe neurodegenerative symptoms, typically resulting in death by the mid-teens. There are currently no effective treatments or cures available for this condition.
Activities
The Sanfilippo Hope Initiative engages in various activities to fulfill its mission:
- Fundraising and Research Support: The organization relies on donations to support research projects and programs aimed at understanding and treating Sanfilippo Syndrome.
- Community Engagement: Through events and campaigns, the initiative encourages community involvement and public awareness about the disease.
Objective
By joining forces with other organizations and grassroots efforts, the Sanfilippo Hope Initiative aims to improve the quality of life for individuals with Sanfilippo Syndrome and strive towards a future with more effective treatments and a possible cure.
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471716277
X (Twitter)
33
Address
Hudsonville
Team Jarod/Team Caleb
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Data about organisation
Birth Defects, Genetic Diseases Research Category
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