CONQUER CACNA1A & CARE FOR OTHERS
CACNA1A is gene that is responsible for communication between brain cells. When a variant occurs on the CACNA1A gene, it changes how the gene functions and causes CACNA1A-related disorders. We are on a mission to spread awareness about CACNA1A-related disorders to promote understanding and facilitate research.
A variant on a CACNA1A gene is considered a rare disease, meaning less than 200,000 people are affected. There is little research for targeted treatments or a cure. We support organizations that are completing research so someday families won't have to hear "No research. No treatment. No cure." when they receive diagnosis.
Throughout the year, we have events to spread awareness and raise funds to help us accomplish our mission to
CARE FOR OTHERS.
CACNA1A-related disorders cause a lot of hospitalizations. We have a mission to make hospital stays a little bit easier by providing families with a Family Comfort Kit of all our favorite items that we have developed since Addilynn's diagnosis and her many hospital stays.
Outpatient physical therapy, occupational therapy, and speech therapy have been a constant in Addilynn's life since she was 9 months old. These therapies have increased her independence and quality of life. They have also helped her regain lost skills after a neurological event.
Our We Bee-lieve grant helps families with the out-of-pocket costs of outpatient therapies.
Addilynn relies on different types of adaptive equipment to increase her independence and provide an increased quality of life. She uses a wheelchair, stander, gait trainer, and communication device...just to name a few! Not all of this equipment is covered by health insurance. Our We Bee-lieve Grant provides assistance with the out-of-pocket costs of this much needed equipment.