OUR STORY
October 2017, our Haley was diagnosed with Batten Disease, specifically CLN1. Our greatest fear was Haley going blind. Today we would consider that a blessing. Batten Disease is a rate inherited disorder of the nervous system. Today there is no known treatment or cure. Those affected suffer from progressive neurological impairment that leads to blindness, seizures, loss of motor skills, and ultimately life.
She is just 8 years old. Haley lives her life as a song. She dances and sings when others might just watch. Her world is glitter, unicorns and magic. Batten Disease will steam that from her. We cannot just stand by and watch the song disappear from her soul.
OUR COMMITMENT
The saying "it takes a village" has never been more true. We are committed to hope... we are committed to love... we are committed to finding a cure. Please join us on this journey and help us find a solution for not just us but all those families out there coping with this disease.
OUR FIGHT
The cost to research and quickly bring FDA approved clinical trials and gene therapy treatments to children with Batten Disease is high. We need to raise more than $900,000 in 2018 and another $1.5 to $3 million in 2019.
And we need to do it quickly. With a goal of human trial gene replacement therapy in 1-2 years we have no time to spare.
SUCCESS
Our success will be realized when Haley and children like her will have their symptom progression slowed, stopped and reversed, leading us to find a cure.
Company Details
- Employees
- 2
- Founded
- -
- Address
- 4676 Commercial St Se, Salem,oregon 97302,united States
- Industry
- Philanthropic Fundraising Services
- NAICS
-
Grantmaking and Giving ServicesGrantmaking FoundationsVoluntary Health OrganizationsOther Grantmaking and Giving Services
- Website
- haleysheroesfoundation.org
- Keywords
- Salem.
- HQ
- Salem, Oregon
Haley's Heroes | A Batten Disease Foundation Questions
Haley'S Heroes | A Batten Disease Foundation's website is haleysheroesfoundation.org
Haley'S Heroes | A Batten Disease Foundation's LinkedIn profile is https://www.linkedin.com/company/haleysheroesfoundation
Haley'S Heroes | A Batten Disease Foundation has
2 employees.
View email and phone details for 2
employees at Haley'S Heroes | A Batten Disease Foundation.
Haley'S Heroes | A Batten Disease Foundation's industry is
Philanthropic Fundraising Services
Haley'S Heroes | A Batten Disease Foundation's top competitors are
Junicon - Juniper Consulting Group,
Charles River Associates,
Curecmt4j/talia Duff Foundation.
Haley'S Heroes | A Batten Disease Foundation's categories are Philanthropic Fundraising Services
Haley'S Heroes | A Batten Disease Foundation's founding year is 2018
