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

SILVER SPRING, Md., Nov. 25, 2025 /PRNewswire/ -- From December 1 to 7, 2025, a coalition of organizations will mark the Eleventh 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 42 international organizations that have come together to inform families, healthcare providers and caregivers about the signs of infantile spasms.

"We've worked tirelessly to drive the message that infantile spasms are a medical emergency requiring swift diagnosis and treatment," said Kari Luther Rosbeck, President & CEO of the TSC Alliance^®. "And while we have made progress educating parents and physicians through Infantile Spasms Awareness Week, we know there are still babies misdiagnosed, which reinforces the importance of this collaborative effort."

"As a member and proud supporter of the Infantile Spasms Action Network, we stand united in our commitment to raise awareness, accelerate diagnosis, and improve outcomes for children affected by infantile spasms," said Lisa French, Executive Vice President and Chief Commercial Officer at Keenova Therapeutics.  "Infantile Spasms Awareness Week is a vital opportunity to educate caregivers, clinicians, and communities about this condition and the urgency of early intervention. Together, we can make a meaningful difference for families navigating this challenging journey."

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.

"Upsher-Smith is proud to stand alongside the Infantile Spasms Awareness Network as an industry partner in recognition of Infantile Spasms Awareness Week," said Rich Dudek, Vice President of Rare Disease Commercial Operations at Upsher-Smith. "We're deeply committed to joining the effort to educate the public and healthcare professionals regarding the importance of prompt and early diagnosis of the disorder, and to ensure that families receive the support they need when starting treatment."

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.

2025 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 | Brave Bears Club | Bridge the Gap-SYNGAP (Now Syngap1 Foundation) | CASK Research Foundation | Child Neurology Foundation | Child Neurology Society | Citizens United for Research in Epilepsy (CURE Epilepsy) | Danny Did Foundation | DEE-P Connections | 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 | KCNQ2 Cure Alliance | LGS Foundation | National Organization for Rare Disorders (NORD) | Pediatric Epilepsy Research Consortium | Pediatric Epilepsy Surgery Alliance (formally The Brain Recovery Project) | Rare Epilepsy Network | RARE Science | Ring14 USA | Seizure Tracker | STXBP1 Foundation | The UK Infantile Spasms Trust | TSC Alliance | Tykes with Spikes | UCLA Health | UCSF Epilepsy Center

Infantile Spasms Awareness Week includes social media and digital advertising campaigns, national and local media interviews, physician awareness projects and activities at the American Epilepsy Society annual meeting in Atlanta. ISAW 2025 is supported by Presenting Sponsors Keenova Therapeutics and Upsher-Smith Laboratories, LLC.

For more information, follow the hashtag #ISAW2025 and visit infantilespasms.org.

CONTACT
Dan Klein
Senior Director, Communications
TSC Alliance
(301) 562-9890
[email protected] 

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SOURCE TSC Alliance