Ninth Annual Infantile Spasms Awareness Week Scheduled for December 1-7
27 Nov 2023
SILVER SPRING, Md., Nov. 27, 2023 /PRNewswire/ -- From December 1 to 7, 2023, a coalition of organizations will mark the Ninth Annual Infantile Spasms Awareness Week (ISAW). The goal of ISAW is to increase awareness and understanding of infantile spasms by offering educational materials to providers, caregivers, and the public; announcing new and useful research and support initiatives; and informing patients and caregivers help is available. The campaign is supported by the Infantile Spasms Awareness Network (ISAN), a coalition of 37 international organizations that have come together to inform families, healthcare providers and caregivers about the signs of infantile spasms.
"Because infantile spasms are a medical emergency, advocating for your baby is key and that's why Infantile Spasms Awareness Week is so important," said Kari Luther Rosbeck, President & CEO of the TSC Alliance®. "If you suspect your child may be showing symptoms of infantile spasms, inform your doctor immediately. Any delay in seeking emergency treatment can increase your child's risk for brain damage."
Because infantile spasms are more subtle than a typical grand mal or "convulsion" seizure, ISAN developed a simple-to-remember mnemonic tool, called
'STOP' Infantile Spasms, to help people remember what's most important when recognizing the disease's subtle symptoms:
S
ee the signs: clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
T
ake a video: record the symptoms and talk to your doctor immediately.
O
btain diagnosis: confirm an irregular brain wave pattern with an EEG test.
P
rioritize treatment: end spasms to minimize developmental delays.
Infantile spasms (IS) are a rare, but serious type of seizure, occurring in 1 in 2,000 children, which can cause catastrophic, permanent damage to a child's developing brain. The seizures include repetitive, but often subtle movements including jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks. The onset of IS peaks between four and six months of age, although these seizures can begin anytime in the first two years. Infantile spasms are often overlooked or misdiagnosed for other conditions, including colic, reflux or a startle reflex. Worldwide, it is estimated a baby is diagnosed with IS every 12 minutes.
2023 ISAN members include: American Academy of Neurology | American Academy of Pediatrics | American College of Emergency Physicians | American Epilepsy Society | Association of Child Neurology Nurses | Be-TSC (Belgium) | Boston Children's Hospital | Bridge the Gap-SYNGAP | Child Neurology Foundation | CASK Research Foundation | Char Bear | Child Neurology Society | CURE Epilepsy | Danny Did Foundation | Duke University Hospital | Dup15q Alliance | Epilepsy Alliance America | Epilepsy Canada | Epilepsy Foundation of America | Epilepsy Ireland | Epilepsy Support Network of Orange County | FamiliesSCN2A Foundation | FundHemi | Global Genes | Hope for HIE| LGS Foundation | Mickie's Miracles | National Organization for Rare Disorders (NORD) | Pediatric Epilepsy Research Consortium | Pediatric Epilepsy Surgery Alliance | RARE Science | Ring14 USA | Seizure Tracker | STXBP1 Foundation | Steunpunt Kinderepilepsie | TSC Alliance | The UK Infantile Spasms Trust
Infantile Spasms Awareness Week includes social media campaigns, national and local media interviews and physician awareness projects. ISAW 2023 is supported by Mallinckrodt Pharmaceuticals and Upsher-Smith Laboratories, LLC.
For more information, follow the hashtag #ISAW2023 and visit infantilespasms.org.
CONTACT
Jaye Isham
Senior Vice President, Strategic Communications
TSC Alliance
(301) 562-9890
[email protected]
SOURCE TSC Alliance
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