#USA #Silver Spring #Infantile Spasms #ISAW #TSC Alliance

Raising Awareness for Infantile Spasms: The Eleventh Annual ISAW

From December 1 to 7, 2025, various organizations will come together to celebrate the Eleventh Annual Infantile Spasms Awareness Week (ISAW). This initiative is vital in enhancing public understanding of a rare but serious condition known as infantile spasms (IS), which affects about 1 in 2,000 infants. The observance aims to equip caregivers and healthcare providers with crucial information, educational resources, and support initiatives while shedding light on the pressing need for early diagnosis and treatment.

Goals and Support

The primary goal of ISAW is to raise awareness about the signs of infantile spasms and to promote timely intervention. Under the umbrella of the Infantile Spasms Awareness Network (ISAN), a coalition comprising 42 international organizations, ISAW endeavors to ensure that parents, caregivers, and medical professionals are well-informed about this condition. According to Kari Luther Rosbeck, President and CEO of the TSC Alliance, there has been significant progress in educating families and doctors about infantile spasms; however, misdiagnosis remains a critical issue. The urgency of recognizing and diagnosing IS cannot be overstated, as infants experiencing these spasms require immediate medical attention to prevent potential developmental delays and lasting damage.

Why Awareness Matters

Infantile spasms, often characterized by subtle symptoms, can appear as repetitive, uncontrolled movements such as head bobs, body crunching, or unusual eye blinking. These signs are sometimes mistaken for symptoms of other conditions like colic or reflex actions, making accurate diagnosis a challenge. Understanding the nuances of these symptoms is essential for timely treatment.

As part of the ISAW initiative, participants will engage in various activities like social media campaigns, public interviews, and educational seminars, specifically targeting healthcare providers and communities. These efforts aim to raise awareness and highlight the importance of early intervention. Organizations like Keenova Therapeutics and Upsher-Smith Laboratories have pledged their support, recognizing the critical need for broader education regarding this serious medical condition.

The STOP Mnemonic

To aid in recognition, ISAN has introduced a helpful mnemonic tool called 'STOP':
1. See the signs - Look for clusters of repeated, uncontrolled movements, typically in the torso or head.
2. Take a video - If possible, record the spasms and consult your doctor immediately.
3. Obtain diagnosis - Confirm the presence of an irregular brain wave pattern through an EEG test.
4. Prioritize treatment - Swiftly address and mitigate the spasms to prevent developmental impacts.

Call to Action

The importance of ISAW extends beyond mere education; it strives to forge a community that recognizes the challenges faced by families dealing with infantile spasms. With a baby diagnosed with IS approximately every 12 minutes worldwide, it is imperative for the public and healthcare professionals to act cohesively in recognizing and addressing this urgent health issue.
Rich Dudek, VP of Rare Disease Commercial Operations at Upsher-Smith, expressed their commitment to raising awareness and ensuring families receive essential support during treatment. This collaborative effort fosters resilience and encourages timely diagnosis, ultimately improving outcomes for affected children.

Conclusion

As we look forward to the upcoming Infantile Spasms Awareness Week, it is crucial to remember the message: awareness can save lives. Together, health advocates, organizations, and communities can make a significant difference for families navigating the complex landscape of infantile spasms. To learn more about the campaign, you can follow the hashtag #ISAW2025 or visit infantilespasms.org.