Infantile Spasms Awareness Week 2016

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Infantile Spasms Awareness Week (ISAW) provides a platform for increasing disease awareness, distributing new research, and recognizing exemplary contributions to the treatment of infantile spasms—a rare, but serious form of epilepsy occurring in children, usually under age one.

Because infantile spasms can be mistaken for other conditions or appear subtly, prompt diagnosis and appropriate treatment are critical for the child’s best developmental outcome. Most pediatricians will only see one or two cases throughout their entire career, therefore it is very important for health care providers and parents/caregivers to know and recognize the signs of infantile spasms.

Awareness efforts like ISAW bring together advocacy organizations, parent/caregivers, industry, and frontline providers to educate the public about infantile spasms. Held December 1-7, the goal 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 There is help! There is hope!


 Help Spread Infantile Spasms Awareness

isawbuttonPlease review the content on this page and at www.infantilespasms.org, a page in the CNF Disorder Directory that includes an article written by child neurologist Dr. W. Don Shields, stories and videos from families living with IS, and community resources to assist parents and caregivers navigating the path of diagnosis, treatment, and management of IS.  If you, someone you know, or your organization is impacted by or is interested in joining this collaborative awareness initiative, please contact Amy Miller at amiller@childneurologyfoundation.org or 214.789.7316 to discuss. To get you started, the Tuberous Sclerosis Alliance has spearheaded the development of an ISAW Toolkit that includes sample emails, Facebook posts, graphics, and more.   Download the toolkit here. Please join us on social media using #ISAW2016 and visit www.isweek.orgAnd check back for new updates from ISAW 2016 partners!


ISAW 2016 Welcomes New Partners

With the success of the Child Neurology Foundation/Tuberous Sclerosis Alliance partnership during ISAW 2015, our goal in 2016 was to expand our partnerships and our outreach. 

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To launch ISAW 2016, CNF hosted an IS Advocacy Forum with representatives from 14 different advocacy, provider and industry partners, including the American Academy of Neurology, the American Academy of Pediatrics, the Child Neurology Society, the Association of Child Neurology Nurses, the American College of Emergency Physicians, the American Epilepsy Society, CURE, Seizure Tracker, the Danny Did Foundation, LGSF, Global Genes, TS Alliance, Lundbeck, and Mallinckrodt.

The Forum provided a unique opportunity to discuss IS advocacy and awareness gaps and opportunities within the child neurology community. It also addressed how further collaboration could assist with awareness and outreach to the communities where it’s needed most as well as the public at large. Strategies were discussed, and goals for further collaboration were agreed upon. We look forward to building these partnerships and reaching these goals through ISAW 2016 and beyond.


ISAW 2016 OFFICIAL PARTNERS

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LGSFoundation logo      GGLogo
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AAPLogoShrt SeizureTracker
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acnn  rarescience
cure lundbeck
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ISAW 2016 EVENTS

  • December 1:
    • Twitter chat using #ISAW2016
    • National and Local TV and Radio interviews with Dr. Martina Bebin of University of Alabama-Birmingham, Principal Investigator of PReVent Trial
    • Announcement of mini-grant recipient
  • December 2:
    • Infantile Spasms Hope Award winner announcement
    • Tuberous Sclerosis Alliance reception at American Epilepsy Society annual meeting
  • December 4:
    • Infantile Spasms Advocacy Forum at American Epilepsy Society annual meeting, 12:00-2:00 P.M. CT
  • December 5:
    • Facebook Live event w/Dr. Bebin
    • Innovation Pavilion at American Epilepsy Society annual meeting

ISAW 2016 OPPORTUNITIES AND INITIATIVES

ADVOCACY AWARENESS MINI-GRANTS

To spread awareness of infantile spasms, the Child Neurology Foundation has awarded six $5,000 mini-grants for advocacy awareness projects.  The 2016 mini-grant recipients are the American Academy of Pediatrics, American College of Emergency Physicians, Danny Did Foundation, Lennox-Gastaut Foundation, Kathy Leavens: Parent Coach, and Seizure Tracker. See the “Partner Projects” section below to learn more.


INFANTILE SPASMS HEROES  AWARD

http://www.prnewswire.com/news-releases/2016-infantile-spasms-hope-award-and-heroes-award-recipients-announced-300362347.html

Since 2010, the IS Heroes Award has recognized a healthcare professional and his or her institution for making a positive difference in the life of a child with infantile spasms. Nominations are accepted from parents and caregivers who wish to acknowledge a provider who has embodied the heroic spirit of quality, compassionate, and efficacious care during diagnosis or treatment of IS.

2016 Infantile Spasms Heroes Award Recipient: Dr. Steven B. Coker; Central DuPage Hospital, Northwestern/Lurie Childrens

 


INFANTILE SPASMS HOPE AWARD

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 has used their experience and shared their story to help generate awareness of IS and educate other parents facing this devastating form of seizures. Hope Award nominations were reviewed by individuals from the partner organizations, families who have lived with infantile spasms and three representative physicians.

2016 Infantile Spasms Hope Award Winner: Ellen Wehrman, Mount Pleasant, MI

Since Ellen Wehrman’s son, Charlie, was diagnosed with infantile spasms in 2012, her family has faced the disease with a positive outlook and a tendency toward sharing. Ellen Wehrman has captured her family’s life, with IS and beyond, on her tumblr blog.

During their journey, the Wehrman family has encountered multiple treatment plans, additional seizure types, and personal struggles like having another child and moving across the country. They continue to be a positive light to all who are also fighting IS.

In February 2013, my daughter was diagnosed with IS and everything we found online was bad news. The Wikipedia entry was enough to make us cry for a week. The only ray of light I found was one post on Reddit by some woman who mentioned her son being diagnosed. When I contacted her, she sent me the link to her blog. When I opened the link, I saw a sweet 1.5 year old sitting in a high chair, drinking from his sippy cup. Nothing gave me hope like that picture. We had been told our daughter, ‘might spend the rest of her life in a wheelchair and might never be able to communicate with us.’ I told my husband that all I wanted was for my daughter to someday be able to sit in a high chair and drink from a sippy cup. Today she runs, jumps and even goes to dance class. She talks and yells and signs and points–she clearly knows how to communicate her needs!

Since that first contact, I have grown to depend on emails, Facebook messages, and even the occasional text from Ellen. We have never met in person, but I dream of someday getting our little miracles together. I consider her a true friend and we have never even talked on the phone. I can think of nobody else more deserving of this award.”


BRENDAN MICHAEL HARNETT IS MINI-GRANT

BABYThe Harnett Mini-Grant was founded by Mr. Michael Harnett in January 2014 as a memorial to his nephew, Brendan Michael Harnett, who was diagnosed with Infantile Spasms and passed away before his first birthday. Each year during ISAW, one $1,000 mini-grant is awarded to a child with infantile spasms and his caregivers to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance. To learn more, visit the Harnett IS Mini-Grant Application Form page.

 

2016 Harnett Mini-Grant Recipient
Robbie and his Family

Robbie is 2 years old and has suffered with a rare form of Epilepsy known as Infantile Spasms since he was 9 months old. We have tried just about every pharmaceutical option there is, the ketogenic diet, and a Corpus Callosotomy brain surgery so far, and he still has seizures every day. The Child Neurology Foundation has been generous in providing us with a grant for Robbie just in time for Christmas.

With this grant we plan to buy a new Kinder pack baby carrier to help us include Robbie in our everyday life; he still cannot sit unassisted or in a grocery cart by himself. We also are getting switched toys for the first time ever which is very exciting. Recently Robbie moved to a room he is sharing with his 4 year old sister so we are getting him a TV to go to bed to and cool lights to make it into a sensory room like the hospital he frequently stays at. Robbie has had a pretty rough first two years but he never stops stops smiling and we know he will never give up. We appreciate the support from our IS community more than words can express.


PARTNER PROJECTS

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rarescience

Through the RARE Bear program, RARE Science would like to help build an IS patient community to support families with children with infantile spasms.

If you or a family you know has a child with IS, RARE Science would like to support you by gifting a one of a kind RARE Bear to these one of a kind special kids. These beautifully-crafted RARE Bears are made and matched to your child’s favorite hobbies and colors by bear makers from 11 countries.

In order to request a RARE Bear for your child, please fill out the RARE Bear request form/photo consent, and email it to pce.cnf@gmail.com.

We ask for your child’s likes so we can match him or her with the perfect bear. After your child received the bear, we request you send a picture of your child with the RARE Bear in its new home, which will be shared with the original bear maker and the many hands that make it possible to send a bear to your child.

See the RARE Bear Kids picture gallery!


SeizureTracker

Seizure Tracker provides free web and mobile resources to help patients and their care providers better understand stquizbuttonseizure activity and treatment efficacy. Seizure Tracker has created new Infantile Spasms educational and awareness resources in their “Seizure Success and You!” information section. These resources include educational facts, links to partner resources and a short quiz with an awareness badge/reward that is easy to share on social media.

This web resource also highlights the Infantile Spasms related tools available on SeizureTracker.com along with the Apple and Android apps.

 


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16isaapwbnrPatient Care Online (PCO) webinar (for practitioners)In this webinar, Dr. Mary Zupanc discusses the causes of infantile spasms and the importance of early recognition. She also explains the differences between infantile spasms and febrile seizures.

Infantile Spasms: What Parents Need to KnowIS Resource Page at HealthyChildren.org, the only parenting website backed by 66,000 pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults.

 


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Infantile Spasms Awareness Week Page


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  • Infantile Spasms/LGS Awareness Page
  • Graphic illustrating the findings of a literature review review to identify discrepancies in the medical literature regarding the relationship between IS and LGS:

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Infantile Spasms Resources

INFANTILE SPASMS INFOGRAPHIC-Little Seizures: Big Consequences

Click infographic to view printable PDF version.

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Infantile Spasms Educational Videos

Infantile Spasms: Moving Quickly to Diagnosis and Treatment 

Entrevista de Espasmos Infantiles 

Los Prolongados Efectos de Espasmos Infantiles