Raise funds to research NALCN Related Disorders

Back in September of 2020, Amanda was diagnosed with an ultra-rare NALCN genetic disorder. Amanda is non-verbal and is globally delayed. She is a amazing 7 year old but at a 1-2 year old level. Amanda has been working really hard to make progress at her own pace. She is the happiest little girl and loves being with her family and friends.

There is currently work underway to establish a research foundation in the US to accelerate efforts in research. I have attached an article that shares some amazing news on a grant for research that was granted to a member of the NALCN community. While this foundation is being established - myself, a few family members and some friends will be running a 5K/half marathon in October to raise funds for NALCN related disorders. All donations will go directly to funding this amazing research.

If you would like to make a tax-deductible donation, please reach out to me directly.

Thank you!!