Advancing Better Care (ABC) for SCN8A

We need to raise $10,000 by the end of the year to be able to continue this work!

Give Today

Share Fundraiser

$9,736

56 Supporters

97% of $10,000 goal

Story


 Please help Alisha, Clayton and many other families around the world dealing with the uncertainty of how to most effectively treat SCN8A.

Any SCN8A caregiver can tell you, nearly every treatment decision and medication change is a guess. Even the most informed doctors have to guess at times because there is little data being used to drive decision-making.

RnrzOp3HDztxiBI3OyEX9ehHA6Gft0OQsKzfZPqW.png

In 2023, we are going to change this!

The International SCN8A Alliance is working with a team from around the world to develop the first ever global diagnosis and
treatment guidelines for SCN8A
.

Over the last year we have been laying the intensive groundwork necessary to advance this process including an exhaustive review of the literature. We have also recruited 30 leading pediatric epileptologists from around the world—representing 5 continents—and a diverse group of SCN8A caregivers who are working to develop consensus on the best care, treatments and health needs of those living with SCN8A and their families.   

This effort is being undertaken in the hopes that no matter where someone with SCN8A is diagnosed or who their doctor is, a comprehensive resource will be available to help inform better treatment and care decisions using the best possible information and experiences. With your help, we aim to foster:

     * Earlier Diagnosis

     * Data driven medication decisions

     * Better referral and treatment for the 
        many related health issues associated with SCN8A

Every donation will help children who are struggling with this relentless disorder to urgently access the best possible care as early as possible and improve quality of life, no matter where they live. 

Please help us by making your donation today, asking your friends to contribute and sharing this campaign widely. 

THANK YOU!

Give Today

Share Fundraiser

$9,736

56 Supporters

97% of $10,000 goal

International SCN8A Alliance

A 501(c)(3) Public Charity

EIN 47-1822559