SILVER SPRING, Md., Nov. 15, 2017 — In advance of Infantile Spasms Awareness Week 2017, held annually December 1-7, a coalition of organizations known as the Infantile Spasms Action Network has announced recipients of both the Infantile Spasms Heroes Award and the Infantile Spasms Hope Award. Infantile spasms are a rare seizure disorder that occur in young children, usually under one year of age. The average age of onset is around four months, but some children may experience spasms as early as one month.  A few children may begin as late as two years.  About 1,200 children in the United States are diagnosed each year with infantile spasms (IS). IS can result in increased risks for developmental delay, lifelong intractable epilepsy, autism, and even death. Fortunately, treatments are available to help control the spasms, but prompt identification and treatment of IS are critical.

The 2017 Infantile Spasms Heroes Award recipient is Dr. Dana Alhaqan. Dr. Alhaqan, who practices at Amiri Hospital in Kuwait City, Kuwait, was nominated by a family who feels Dr. Alhaqan is truly their daughter's hero. “Although she is a pediatrician and not a neurologist, Dr. Dana changed our daughter's life by taking the initiative and observing her closely and arranging the required tests and consultation with other specialists and other hospitals in Kuwait. Dr. Dana managed to remove all obstacles in front of us to get a clear diagnosis and receive the appropriate treatment.” The Infantile Spasms Heroes Award was established in 2010 by the Child Neurology Foundation to recognize a deserving healthcare professional for making a positive difference in the life of a child with infantile spasms by embodying the heroic spirit of quality, compassionate, and efficacious care during diagnosis or treatment of IS. 

Paul and Lisa Rossignol were announced as the 2017 Infantile Spasms Hope Award recipients. Established in 2015 by the Tuberous Sclerosis Alliance, the Infantile Spasms Hope Award honors a family or individual who not only demonstrated courage in the face of their child's diagnosis of infantile spasms, but also used the experience to share their story to help generate awareness of infantile spasms and educate other parents facing this devastating form of seizures.

The Rossignol's 10-year-old daughter Lily endured a prenatal stroke and was diagnosed with infantile spasms at 6 months old. Unfortunately, her seizures were drug resistant, so Lily had the right half of her brain removed.  She's been seizure free ever since.  According to the Rossignol's award nomination, “They educate and advocate for improved health care policy, family-centered care, and the importance of community support and resources for each family. The entire Rossignol family has been assets to others facing a new diagnosis of any disability offering in-person and distant support through phone calls, prayer chains, social media support, care packages, fundraising, and vigils.”

Infantile Spasms Awareness Week (ISAW) is held annually from December 1 to 7. The goal of ISAW is to increase awareness and understanding of infantile spasms through the distribution of objective educational materials to providers, caregivers, and the public; the announcement of new and useful research and support initiatives; the recognition of exemplary contributions to care; and the declaration to patients and caregivers that help is available and hope exists. For more information, visit www.ISweek.org.

Members of the Infantile Spasms Action Network include: American Academy of Neurology, American Academy of Pediatrics, American College of Emergency Physicians, American Epilepsy Society, Association of Child Neurology Nurses, Bcureful, Belgium TSC, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation, Child Neurology Foundation, Child Neurology Society, CURE Epilepsy, Danny Did Foundation, Dup15q Alliance, Epilepsy Foundation of America, Global Genes, Greenwich Biosciences, Lennox-Gastaut Syndrome Foundation, Mallinckrodt Pharmaceuticals, Mickie's Miracles, National Organization for Rare Disorders, RARE Science, SeizureTracker.com, Tuberous Sclerosis Alliance and Upsher-Smith Laboratories.

ISAW 2017 is supported by charitable contributions and educational grants from Greenwich Biosciences, Lundbeck, Mallinckrodt and Upsher-Smith.

CONTACT: Jaye Isham, 301-562-9890, [email protected]

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SOURCE Tuberous Sclerosis Alliance

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