2022 UPDATE
Ireland has been accepted as a patient of N-Lorem, a non-profit focused on creating individual ASO treatments for patients with nano-rare diseases caused by genetic mutations. We are hopeful N-Lorem is the answer to our prayers for Ireland.
What is Ireland's Armor?
Ireland's Armor is made up of all of our family and friends who have prayed for and supported Ireland over the years!
"Put on all of God’s armor so that you will be able to stand firm against all strategies of the devil." -Ephesians 6:11
Our Mission
As a family with a child affected by a CACNA1A mutation, our mission is to raise awareness about CACNA1A related disorders with the goal of gaining momentum for research and better treatment options. There are currently no clinical trials available for CACNA1A patients. Our goal is to change this.
About Our Daughter Ireland
Ireland has a c.4177G>A (p.Val1393Met) CACNA1A mutation.
Our current biggest challenge is seizure control. If you have any helpful information about treatments specific to Ireland's variant, please contact us.
To connect with us and our experience related to CACNA1A please follow us on Instagram.