Tenth Annual Infantile Spasms Awareness Week Scheduled for December 1-7

SILVER SPRING, Md., Nov. 25, 2024 /PRNewswire/ -- From December 1 to 7, 2024, a coalition of organizations will mark the Tenth 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.

"Infantile spasms are a medical emergency and can cause permanent brain damage if not treated immediately," said Kari Luther Rosbeck, President & CEO of the TSC Alliance^®. "Infantile Spasms Awareness Week is a concerted effort to educate parents and healthcare providers about the importance early diagnosis and swift treatment, which can protect children from severe developmental challenges."

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:

• See the signs: clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
• Take a video: record the symptoms and talk to your doctor immediately.
• Obtain diagnosis: confirm an irregular brain wave pattern with an EEG test.
• Prioritize treatment: end spasms to minimize developmental delays.

Mark Halvorsen, PharmD, Associate VP of Medical and Scientific Affairs at Upsher-Smith Laboratories, LLC, a company with nearly ten years of dedication to the infantile Sspasms community, stresses the importance of early recognition. "By educating caregivers, healthcare providers and the general public, we can improve early diagnosis and treatment of infantile spasms," he says. "Upsher-Smith is honored to collaborate with the 37 ISAN partner organizations in spreading awareness."

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.

2024 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 (Now Syngap1 Foundation) | CASK Research Foundation| Char Bear, LLC | Child Neurology Foundation | Child Neurology Society | Citizens United for Research in Epilepsy (CURE Epilepsy) | Danny Did Foundation | Duke University Hospital | Dup15q Alliance | EmmaIS | Epilepsy Alliance America | Epilepsy Canada | Epilepsy Foundation | Epilepsy Ireland | Epilepsy Support Network of Orange County | FamiliesSCN2A Foundation | Fund Hemi | Global Genes | Hope for HIE | LGS Foundation | National Organization for Rare Disorders (NORD) | Pediatric Epilepsy Research Consortium | Pediatric Epilepsy Surgery Alliance (formally The Brain Recovery Project | RARE Science | Ring14 USA | Seizure Tracker | STXBP1 Foundation | Steunpunt Kinderepilepsie | The UK Infantile Spasms Trust | TSC Alliance

Infantile Spasms Awareness Week includes social media campaigns, national and local media interviews, physician awareness projects and activities at the American Epilepsy Society annual meeting in Los Angeles. ISAW 2024 is supported by Presenting Sponsor Upsher-Smith Laboratories, LLC and Sponsor Mallinckrodt Pharmaceuticals.

For more information, follow the hashtag #ISAW2024 and visit infantilespasms.org.

CONTACT
Jaye Isham
Chief Outreach Officer
TSC Alliance
(301) 562-9890
[email protected] 

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SOURCE TSC Alliance