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Our Mission


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CACNA1A Awareness

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.  

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Support 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.  

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Throughout the year, we have events to spread awareness and raise funds to help us accomplish our mission to 




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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.  

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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.  

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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.  

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