Help Protect All People with Rare Diseases
We are stronger together – over 30 million Americans are affected by a rare disease – 50% of them children! 80% are genetic. And less...
Report from Rare Disease Week in D.C.
It has been an amazing week to come together with rare disease advocates from 48 states representing over 160 rare disease to advocate...
A Countdown of Seven Actions to Support SCN8A Children and Families
Thanks to The Cute Foundation, Merily and all the families for collaborating to produce the wonderful collage. Note the children in the...
12 Steps to Becoming an Informed Supporter for SCN8A Children
# 12 – Learn 6 basic FACTS about SCN8A epilepsy Will you accept our CHALLENGE to learn something new each day about SCN8A? If you’re a...
Rare Genetic Epilepsy Spurs Families into Action
WASHINGTON – Families of over 150 children globally struggling with SCN8A - a rare but devastating genetic disorder - are joining forces...
Increasing Epilepsy & SCN8A Awareness
The FIRST International SCN8A Epilepsy Awareness Day is coming up on February 9th. Families across the globe impacted by this cruel...
Another kind of vacation...
Elliott is well but we are so exhausted. We just returned home from a vacation, cruising, with, Bubbie, Grandpa and Auntie Shana. It was...
Our Tale of Progress through Partnerships
One of the overwhelming emotions of coping with a diagnosis of a debilitating and rare genetic disorder is a profound sense of isolation....
The son we're hoping to meet
I would like to tell you about a boy I am eager to meet. He is about 14 months now and full of life. Instead of spending time in...
Big News for the Coneckers...We're Growing!
I’ll start with the news… I am pregnant with our second child. Several years ago, John and I discussed the family we anticipated having,...
