Infantile Spasms Awareness Week December 1-7, 2019 #ISAW2019
Infantile Spasms (IS) are a medical emergency. Infantile spasms are a rare, but very serious type of seizure. Infantile spasms are caused by a condition in a baby’s brain and include repetitive, but often subtle movements—such as jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks. IS can be misdiagnosed as colic, reflux, or a startle reflex.
Harnett & RISE Family Grants
In 2014, the Harnett Grant was founded by Mr. Michael Harnett, as an enduring memorial to his nephew, Brendan Michael Harnett. Brendan was diagnosed with infantile spasms and passed away before his firstbirthday. CNF gratefully partners with the Harnett family again this year to honor Brendan through the offering of one $1,000 grant to assist families living with infantile spasms.
In addition, CNF proudly offers 2019 RISE Family Grants. This year, with support from our Infantile Spasms Action Network (ISAN) partners, CNF is offering ten $1,000 grants to families living with infantile spasms.
The Harnett and RISE Family Grants are intended to help families by offsetting expenses that may only be partially covered by insurance or not at all. In the past, families have utilized these grants for items such: durable medical equipment, assistive technology, therapy services, respite care, etc. Ten families will be chosen at random and will be notified in advance of Infantile Spasms Awareness Week, December 1-7, 2019.
This year’s application period is now over, do sign up for our CNF Partners email list to be the first to know about future opportunities.
CNF proudly convenes the Infantile Spasms Action Network (ISAN) — a collaborative network of 25+ national and international entities dedicated to raising awareness for IS. Together We Can STOP IS!
Although awareness efforts are year-round, Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7. During ISAW 2017, the Infantile Spasms Action Network (ISAN) introduced the STOP Infantile Spasms mnemonic. With the mnemonic as the centerpiece for 2017 awareness, we reached over 195 million due to the collective efforts of ISAN.
This helpful mnemonic tool – an easily remembered acronym—is STOP Infantile Spasms:
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
Know the signs to ‘STOP’ Infantile Spasms. Identifying spasms is critical for parents, caregivers and providers.
Learn More about IS and Spread the Word!
ISAN looks forward to more engaging awareness efforts this year! Help us spread the word! The messaging below can be shared on social media or in other partner communication networks. Please use this site ISweek.org and #ISAW2018.
Infantile Spasms (IS) are a medical emergency. Infantile spasms are a rare, but very serious type of seizure.
- Infantile spasms are caused by a condition in a baby’s brain and include repetitive, but often subtle movements—such as jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks. IS can be misdiagnosed as colic, reflux, or a startle reflex.
- While infantile spasms appear as subtle movements – not as outwardly visible as grand mal or “convulsion” seizures – they are still a dangerous form of epilepsy.
- Often, infantile spasms occur in quick succession—sometimes dozens at a time. A baby can have more than 100 seizures in one day!
- Worldwide, it is estimated that a baby is diagnosed with infantile spasms every 12 minutes.
- Infantile spasms occur in up to 35 percent of children with tuberous sclerosis complex (TSC), a genetic disorder that causes tumors to form in various organs and the leading genetic cause of both epilepsy and autism.
Know the signs to ‘STOP’ Infantile Spasms. Urgent identification is critical for parents, caregivers and providers.
- Pediatricians, emergency care physicians, and family practitioners are often the first to see a baby with infantile spasms (IS). Awareness of IS symptoms and prompt action are critical.
- Parents and caregivers often report that their concerns are not heard by their providers and infantile spasms are overlooked, but they should feel empowered to pursue more investigation.
- The earlier a child is diagnosed, the greater the chances that the spasms can be effectively treated.
- A helpful mnemonic tool – an easily remembered acronym—is ‘STOP’ Infantile Spasms:
- 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
- To download the STOP IS graphic elements, including the logo and animated video, click here.
- Select the file you’d like to access and click on the “Download” button in the top right corner.
- The animated video can also be shared via YouTube: https://youtu.be/rCC92Q52hdk.
We’re raising awareness about Infantile Spasms in hopes of a brighter future. Awareness leads to opportunity!
- Held December 1-7, Infantile Spasms Awareness Week helps parents, as well as physicians and other health care providers, know about this disease and treatments.
- To join the conversation on Twitter, use the hashtag #ISAW2019. Together we can STOP IS!
Research is critical. Research about infantile spasms is gaining momentum.
- About 80 percent of children with TSC develop epilepsy within the first three years of life, and infantile spasms occur in up to 35 percent of children with TSC.
- Some researchers believe that by identifying abnormal brain activity prior to the onset of seizures, we’ll be able to intervene earlier and prevent infantile spasms or other types of seizures.
- The study will recruit 80 infants with TSC at 15 sites across the country and aims to determine the impact of preventive treatment with Vigabatrin on the developmental outcomes of children at two years of age. We welcome those interested to contact the Tuberous Sclerosis Alliance at tsalliance.org or 800-225-6872.
- A clinical trial is recruiting newly diagnosed infants (aged 1-24 months) with infantile spasms to see if cannabidiol (CBD), used in combination with Vigabatrin for the treatment of IS, is better than Vigabatrin alone. To learn more, visit: www.childneurologyfoundation.org/providers-or-researchers/clinical-trials-directory
What Do Infantile Spasms Look Like?
IS can be mistaken for another condition or seen as not harmful, but knowing what to look for, followed by prompt diagnosis and appropriate treatment are critical for a child’s best developmental outcome. We thank the Infantile Spasms Project for sharing these videos.
VIDEO #1: In this first example, we see an infant with a cluster of individual spasms. Each spasm is less than one second long and heralded by sudden change in behavior with a look of surprise, wide opening of the eyes, brief stare, and elevation/extension of both arms. In between each spasm, the infant appears to be fine. This is very typical of infantile spasms.
VIDEO #2: Next, we see a 6 month old boy who similarly exhibits a cluster of spasms. Of particular note, each spasm is characterized by more vigorous extension of the right arm, in comparison to the left. This suggests that the seizures (spasms) originate in the left brain. This was confirmed by neurodiagnostic testing, and this boy underwent a successful hemispherectomy after several medications were unsuccessful. You can read more about his story at evanstauff.com.
VIDEO #3: The infant in this video experiences a cluster of spasms that is slightly different. Although each spasm in the cluster is brief, and similarly characterized by a sudden arrest of behavior with extension of both arms, we see that the spasms provoke an emotional reaction with crying—which momentarily stops with each spasm. This is fairly common and many children with infantile spasms have clusters accompanied by crying or fear. In contrast, some children experience unexpected laughter or happiness. The reasons for these emotional phenomena are not entirely clear but suggest that spasms often affect regions the brain responsible for emotion.
VIDEO #4: The next video shows an infant with fairly typical infantile spasms, with a vigorous head drop and simultaneous lifting of both arms. There is no clear asymmetry in the appearance of the spasms. Compare this video with the following VIDEO 5 – the same patient.
VIDEO #5: This shows the same infant presented in VIDEO #4. This video was recorded 10 weeks after the first video, following a course of therapy and partial improvement. Notice that the spasms are now “focal” and manifest with a much milder head-drop, and lifting of just the left arm. This suggests that the right brain is the source of the seizures (spasms). This example demonstrates how it is important not to assume that symmetric spasms exclude the possibility of a “focal” source of seizures.
We share this video, produced by the UK Infantile Spasms Trust and developed to raise public awareness of this rare but potentially devastating disease of infants. Find out more at ukinfantilespasmstrust.org
Infantile Spasms Action Network (ISAN)
In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year IS awareness and education initiative. IS efforts are showcased during ISAW. In 2016, CNF convened two forums that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise IS awareness.
Today, this group – the Infantile Spasms Action Network (ISAN), convened by CNF – has grown into a collaborative network of 26 national and international entities focused on raising awareness for infantile spasms. Do visit the websites of these wonderful organizations to see first-hand their commitment to the child neurology community.
2018 ISAN Members: 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 | INSYS Therapeutics | LGS Foundation | Mallinckrodt Pharmaceuticals | Mickie’s Miracles | National Organization for Rare Disorders (NORD) | RARE Science | Seizure Tracker | Tuberous Sclerosis Alliance | The UK Infantile Spasms Trust (UKIST) | Upsher-Smith Laboratories
Questions about ISAN? Want your organization/company to get involved? Contact email@example.com.
New Online Course from American Academy of Pediatrics (AAP) and American College of Emergency Physicians (ACEP) – Infantile Spasms: Early Recognition and Treatment
This online course is designed to help primary care and emergency physicians recognize and identify the typical signs and symptoms of infantile spasms. It will also review the most effective therapies for infantile spasms.
- Identify the typical signs and symptoms of infantile spasms in infants
- Recognize the various causes of infantile spasms
- Recognize that infantile spasms can occur in both infants who are developing typically, as well as infants with developmental delay
- Describe how early treatment of infantile spasms improves cognitive and developmental outcomes
- Select effective therapies for infantile spasms, using evidence-based medicine and American Academy of Neurology (AAN) practice guidelines
Course was developed by the American Academy of Pediatrics and the American College of Emergency Physicians, with practice guidelines from American Academy of Neurology – all members of ISAN. This PediaLink course was supported by the Child Neurology Foundation.
Register today. MOC/CME available. $29 for non-AAP members.
Patient Assistance Programs for Sabril® and Currently Available Generic Vigabatrin
Due to challenges reported by patients and providers, ISAN developed an informational table to help patients and health care provider understand currently available patient assistance programs and their requirements for Lundbeck Sabril®, and generic vigabatrin products offered by PAR Pharmaceutical, Amneal and Upsher-Smith as well as a private foundation offering help with co-pays. Additional information available here from our ISAN partner, TS Alliance.
SHAREPlus Program Support Center
- Only new commercially insured patients one month to 2 years old with a confirmed diagnosis of infantile spasms and registered in the REMS system are eligible for a one-time 30-day supply while receiving insurance approval.
- No bridge supply offered for ongoing prescription.
- Co-pay assistance may be available for commercially insured patients. Click here for eligibility information.
- Other patient assistance may also be available. For more information, contact the Lundbeck Patient Assistance Program at 833-800-0119.
Patient Support Program
- Help with benefits verification and prior authorizations (PAs) and appeals.
- “Quick Start Shipments” provide a 5-day supply of product where a PA or appeal will take more than 24 hours to resolve.
- A second 5-day supply will be available for patients experiencing longer delays for coverage.
- Patient Assistant Program offers no-cost product for those who do not qualify for coverage, co-pay or alternate funding.
- Co-Pay Assistance where alternate funding assistance is not available for commercially insured patients (those without Medicare Part D or Medicaid).
Patient Assistance Resource
- Only for commercially insured patients one month to 2 years old with a confirmed diagnosis of infantile spasms.
- “Quick Start” pack will provide a 5-day supply for those requiring prior authorization.
- A second 5-day supply will be dispensed on an as-needed basis during insurance approval.
- For eligible patients, PAR provides co-pay assistance and patient assistance programs. For eligibility requirements, contact the Patient Assistance Resource numbers above.
(vigabatrin) for Oral Solution Access Pathways® Program
866-923-1954 (M-F 8am-9pm ET; Fri-Sun 9pm-9pm ET)
- Available for new and existing patients.
- Starter Prescription / Bridge Prescription will provide a 7-day supply if there is any delay in getting a prescription filled (prior authorization, weekend, insurance change).
- Additional 7-day supply will be dispensed as needed if there are further delays due to insurance approval (up to 28 days per starter prescription).
- Access Pathways® provides co-pay and patient assistance for eligible patients. To learn more about these programs, contact Access Pathways® at the number above.
- For more information, click here
Private Foundation Patient Support
- Offers co-pay assistance program for infantile spasms only.
- Provides eligible underinsured individuals with financial assistance to cover all or part of the individuals’ out-of-pocket cost for the supported medications. These programs give individuals the ability to afford their medications.
- For more information, click here.
Recap: ISAW 2017 Events
ISAW was held in conjunction with the American Epilepsy Society meeting in Washington, DC. ISAW aims to increase awareness and understanding of IS through developing and distributing educational materials to providers, caregivers, and the public; announcing new and useful research and support initiatives; recognizing exemplary contributions to care; and inviting families living with IS to be part of a larger community—many stories with one voice. Access the November 30 News Release re: ISAW 2017. With the mnemonic as the centerpiece for 2017 awareness, we can report that over 195 million were reached due to the collective efforts of ISAN during ISAW 2017!
In addition to release of the STOP Infantile Spasms mnemonic, other ISAW2017 activities and events included:
A successful Satellite Media Tour that highlighted STOP Infantile Spasms and ISAW 2017 events
An animation created to educate parents and health care providers to help STOP infantile spasms: [S]ee the signs, [T]ake a video, [O]btain a diagnosis, [P]rioritize treatment:
An Innovation Pavilion on Infantile Spasms was held on December 4 and featured expert panelists, who were broadcast via Facebook live:
IS Clinical Panel: Signs, Symptoms and Causes of IS: Mary Zupanc, MD | Current Treatment Options for Infantile Spasms: James Wheless, MD | Value of Early Genetic Testing for Infants Diagnosed with Infantile Spasms: Anne T. Berg, PhD.
IS Research Panel: Preclinical Models of IS and Current Testing: Aristea Galanopoulou, MD, PhD | PREVeNT Clinical Trial (Preventing epilepsy using vigabatrin in infants w/TSC): Martina Bebin, MD, MPA | Other Potential Treatments for TSC: Shaun Hussain, MD, MS.
A Congressional Briefing Breakfast was held on December 5 to raise awareness of infantile spasms: urgent need for accurate diagnosis, current treatments available and research on the horizon to prevent these seizures:
- Welcome on Behalf of Infantile Spasms Action Network (ISAN): Amy Brin, MSN, MA, PCNS-BC; Executive Director, Child Neurology Foundation
- Infantile Spasms: What They Are and Why You Should Care: Shaun Hussain, MD, MS; Director, UCLA Infantile Spasms Program | Assistant Professor of Pediatrics | Board Member, Child Neurology Foundation
- Mickie’s Miracles: Conquering Infantile Spasms: Kristie Griess; Mother and CEO/Visionary Founder of Mickie’s Miracles
- Tuberous Sclerosis Complex: Leading Symptomatic Cause of Infantile Spasms and Model System for Research: Kari Luther Rosbeck; President/CEO, Tuberous Sclerosis Alliance
- Preventing Epilepsy: What is on the Horizon for Infants with Tuberous Sclerosis Complex: E. Martina Bebin, MD, MPA; Primary Investigator, Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT) Clinical Trial | Professor of Neurology and Pediatrics, University of Alabama at Birmingham School of Medicine | Board Member, Tuberous Sclerosis Alliance
CNF provides Infantile Spasms Awareness Grants to ISAN advocacy partners interested in building awareness for IS. Funded projects are to be implemented in conjunction with ISAW. The 2017 Grant recipients were: American Academy of Pediatrics | CURE Epilepsy | Danny Did Foundation | Dup15q Alliance | Mickie’s Miracles. Mickie’s Miracles developed this PSA to raise awareness of IS: