"Families" is part of our name for a reason. Rare and devastating, SCN2A-related disorders affect the entire family. Our team of leaders strive every day and in every way to improve the lives of not only the patients, but the entire family.
Our Core Values provide us with the set of guidelines to help us fulfill our Vision and Mission.
Our VISION is a world with effective treatments and cures for all SCN2A-related disorders.
Our MISSION is to accelerate research, build community and advocate to improve the lives of those affected by SCN2A-related disorders around the world.
Our core Values are:
» URGENCY - As parents ourselves, we understand the daily suffering of all those affected by this disorder so we aim, everyday, to beat the clock and save their lives and improve their futures.
» INTEGRITY - We say what we believe, and we do what we say. We are trusted because we are trustworthy. In our personal, team, and organizational lives, we act with uncompromising honesty, honor, and truthfulness.
» COLLABORATION - We are stronger together. We listen and evolve together for the sake of a collective goal.
» INCLUSION - We recognize, value, and effectively utilize the talents, skills, and perspectives of every teammate and every family we serve.
To accomplish our vision and mission, we will:
- Coordinate and collaborate with the global scientific community to understand the function of the SCN2A gene in order to develop effective treatments and a cure for SCN2A disorders
- Increase medical community and public awareness of the complexity and potential severity of SCN2A disorders
- Provide educational and emotional support for those affected by SCN2A disorders
- Raise money to fund our goals
PUTTING SCN2A ON THE MAP
As the parent of a child with SCN2A-related disorders, we ask that you please put yourself and your child "on the map" by reaching out and letting us know you exist (even anonymously if you prefer). It is one of THE MOST IMPORTANT THINGS YOU CAN DO FOR YOUR CHILD, and it is the only way we will ever be able to advocate for new SRD treatments and therapies.
* Argentina, Australia, Belgium, Brazil, Canada, Chile, China, Colombia, Costa Rica, Cyprus, Denmark, Egypt, France, Georgia, Germany, Ghana, Greece, Iceland, India, Iran, Islamic Republic of, Ireland, Israel, Italy, Kenya, Korea, Republic of, Lithuania, Luxembourg, Malaysia, Mauritius, Mexico, Namibia, Nepal, Netherlands, New Caledonia, New Zealand, Nigeria, Norway, Pakistan, Poland, Portugal, Qatar, Romania, Russian Federation, Rwanda, Serbia, Slovenia, South Africa, Spain, Switzerland, Ukraine, United Arab Emirates, United Kingdom, United States, Uruguay