Bringing the voice of SCN8A families to priorities in research, clinical care, policies, and funding

Amplifying the Voice of SCN8A Families

We seek to inform, facilitate and empower SCN8A families to make our voices heard.

Families know the challenges and pervasive uncertainties about our children’s condition and care better than anyone else.

Let’s speak up, speak out, and advocate for improvements in our children’s quality of life and care.

Dialogue with SCN8A Researchers and Clinicians

The Alliance provides ongoing channels for families to provide regular informal and structured input to SCN8A clinicians and researchers – thru the SCN8A Research Consortium and the SCN8A Clinicians Network.

Informing Congress

A wide range of federal policies have a significant impact on the state of research on SCN8A and rare epilepsies, Medicaid and waiver coverage, public health policies, drug development for rare diseases, and federally-established and enforced rights for the differently-abled. We provide information, mechanisms, and community to help you speak up and maximize federal support for the best possible future for our children.

Advocating before Federal Agencies

After laws are passed by Congress, federal agencies are required to consult with and take into account priorities and concerns of individuals and families affected by rare diseases. The Alliance tracks the most important activities in these agencies and helps SCN8A families have their voices, concerns, and priorities heard and understood.

Industry

The Alliance actively partners with the two pharmaceutical companies developing SCN8A-targeted therapies for clinical trials. We provide ongoing opportunities to help families stay informed of progress and provide ongoing input and feedback on their questions, concerns, and priorities. We partner with multiple other pharmaceutical companies and BIO to continually bring the voice and priorities of our community to their attention.

Shaping strategies for Curing the Epilepsies, 2021

The Alliance team has been an active participant in the major NINDS/AES effort to update national epilepsy research priorities and identify needed transformations to accelerate progress toward a cure for all epilepsies. We provide channels for family input and keep those perspectives front and center as follow up priorities and implementation of strategies are developed. We need measures that will produce early and measurable improvements in the quality of life of our children!

Finding your voice

We all know improvements are needed – the Alliance supports families to find ways to speak up and make their voices heard. Participation in SCN8A family regional and variant groups provide opportunities to establish ongoing exchange of information between families and other stakeholders. These channels help family voices being clear and effectively communicating family-centered priorities.