February 28, 2017 is Rare Disease Day! Everyone has a role to play in furthering rare disease research. Go to rarediseaseday.org to find out more.
|Because infantile spasms can be mistaken for other conditions or appear subtly, prompt diagnosis and appropriate treatment are critical for a child’s best developmental outcome – and that’s why we’re dedicated to raising awareness of this disease.
But awareness is just the first step – we also need more research. The first ever preventive epilepsy research project specific to infantile spasms in tuberous sclerosis complex (TSC) is beginning in the USA. Some researchers believe that by identifying abnormal brain activity prior to the onset of seizures, earlier intervention could prevent infantile spasms or other types of seizures. The study will recruit 80 infants with TSC (infantile spasms occur in an estimated 30% of children with TSC) at seven sites across the country.
Efforts like ISAW bring together advocacy organizations, parent/caregivers, industry, and frontline providers to educate the public about infantile spasms. The goal is to increase awareness and understanding of infantile spasms through education and research. The future is bright.
Please join us on social media using #ISAW2016 and visit www.isweek.org