About Haley's heroes | a batten disease foundation
Haley's Heroes | A Batten Disease Foundation: Raising Awareness and Finding a Cure
Haley's Heroes is a non-profit organization that aims to raise awareness and find a cure for CLN1 type Batten Disease. This rare genetic disorder affects children, causing progressive neurological deterioration, seizures, blindness, and ultimately premature death. Haley's Heroes was founded by the parents of Haley Mae Koontz, who was diagnosed with CLN1 type Batten Disease at the age of two. Despite their devastating loss when Haley passed away at the age of four in 2016, her parents continue to honor her memory by advocating for research and support for families affected by this disease.
The mission of Haley's Heroes is to fund research towards finding a cure or treatment for CLN1 type Batten Disease. They also aim to provide support and resources for families affected by this disease through education, advocacy, and community outreach programs. The foundation relies on donations from individuals and organizations who share their vision of eradicating this devastating disease.
One way that Haley's Heroes raises awareness about CLN1 type Batten Disease is through their annual "Haley Mae Classic" golf tournament fundraiser. This event brings together supporters from all over the country to play golf while raising funds for research towards finding a cure or treatment for this disease.
Another way that Haley's Heroes advocates for families affected by CLN1 type Batten Disease is through their "Hero Program." This program provides financial assistance to families who are struggling with medical bills related to caring for a child with this disease. The Hero Program also offers emotional support through peer-to-peer connections between families facing similar challenges.
In addition to these initiatives, Haley's Heroes also partners with other organizations in the fight against rare diseases such as CLN1 type Batten Disease. They collaborate with researchers at leading institutions such as Nationwide Children’s Hospital in Columbus Ohio where they have established an endowed chair in Haley’s name to support research into Batten disease.
Haley's Heroes is committed to using their platform to raise awareness about CLN1 type Batten Disease and advocate for families affected by this disease. They believe that through education, research, and community outreach, they can make a difference in the lives of those impacted by this rare genetic disorder.
If you are interested in supporting Haley's Heroes' mission, there are several ways you can get involved. You can make a donation on their website or participate in one of their fundraising events such as the "Haley Mae Classic" golf tournament. You can also volunteer your time or resources to help spread awareness about CLN1 type Batten Disease and support families affected by this disease.
In conclusion, Haley's Heroes is an inspiring organization that is dedicated to raising awareness and finding a cure for CLN1 type Batten Disease. Their commitment to funding research towards finding a cure or treatment for this devastating disease is admirable. Through their Hero Program and community outreach initiatives, they provide much-needed support for families affected by CLN1 type Batten Disease. If you want to make a difference in the fight against rare diseases like CLN1 type Batten Disease, consider supporting Haley's Heroes today!