ACCOMPLISHMENTS OUR CONTRIBUTION TO THE CHILD NEUROLOGY COMMUNITY

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1 20 16 ACCOMPLISHMENTS OUR CONTRIBUTION TO THE CHILD NEUROLOGY COMMUNITY

2 2016 has proven to be a year for CNF to not only further define ourselves, but also illustrate our immense capabilities to lead programs & initiatives that address immediate needs facing the child neurology community. This year s accomplishments only deepen our commitment to serving the children and families living with neurologic conditions. Looking forward to 2017! Amy Miller Executive Director ACHIEVEMENTS

3 CONTRIBUTIONS 2 4 Transitions of Care 6 Infantile Spasms Awareness Week Infantile Spasms Advocacy Mini-Grants Research Grants and Scholarships 10 Infantile Spasms Heroes Award 12 Brendan Michael Harnett Infantile Spasms Mini-Grant 14 Annual Child Neurology Society CME Symposium: Medical Cannabis in Epilepsy Featured CNF Programming Board of Directors Peer-to-Peer Parent Coach Program Child Neurology Community Education 20 Social Media Growth 21 Transparent Business Operations 1

4 TRANSITIONS OF CARE Improving the transition process from the pediatric to adult healthcare system for patients, caregivers, and providers was a top priority for Child Neurology Foundation in Thanks to our Transitions Project Advisory Committee (TPAC) and expert panel of authors, our success was defined by the following lasting contributions to the child neurology community ACHIEVEMENTS

5 Consensus Statement Published in Neurology The Neurologist s Role in Supporting Transition to Adult Healthcare: A Consensus Statement, was published in Neurology. Authored by a panel of 13 interdisciplinary experts, the paper addresses the role of the child neurology team in transitioning children to the adult healthcare system. This paper is endorsed by: The American Academy of Neurology (AAN) The Child Neurology Society (CNS) The American Academy of Pediatrics (AAP) The American Epilepsy Society (AES) view full paper Patient & Provider Resources The Transitions Project Advisory Committee developed 6 clinical tools to support patients, families, and providers in the transition from the pediatric to adult healthcare system. Patient/Caregiver view webinar Provider Child Neurology Community Conversations from the Voices of the Provider, Caregiver, and Advocate: Transition into Adulthood 3

6 CNF AWARDED $235,000 IN RESEARCH GRANTS AND SCHOLARSHIPS The Child Neurology Foundation has contributed over 3.5 million dollars to the research endeavors of 69 young investigators, aimed at identifying treatments and cures for pediatric neurologic diseases. In 2016, for the first time, the CNF grants were combined with the awards given by the Child Neurology Society (CNS). A specialized committee was developed to oversee the collaboration, which will continue in 2017 and beyond to ensure a valuable contribution to the careers of young instigators in the child neurology community Child Neurology PERF Scientific Grant Recipient $100,000 Louis Manganas, MD, PhD Stony Brook University Medical Center Quantification of neural progenitor cells in new onset pediatric seizures. view grant 2016 Shields Research Grant Recipient $100,000 Peter Tsai MD, PhD University of Texas Southwestern Medical Center Cerebellar-Cortical Circuits in Autism Spectrum Disorders. view grant ACHIEVEMENTS

7 2016 Michael SanInocencio Lennox-Gastaut Syndrome Research Grant Recipient $30,000 Eric Payne, MD, MPH, FRCP(C) Mayo Clinic Rochester Neurophysiological and inflammatory biomarkers of seizures and brain injury in children I am extremely grateful to the CNF for their funding support! This grant will help to provide the foundation for a research career aimed at improving the lives of children with brain injury and epilepsy. view grant 2016 Neurodevelopmental Disabilities Summer Research Scholarship $3,500 Ms. Ashley Bach University of California San Francisco White matter injury and brain development in preterm newborns and neurodevelopmental outcome at school age My summer research, supported by the Child Neurology Foundation, has expanded and cultivated my interest in the field of child neurology, and I am incredibly thankful to have been given this opportunity. view scholarship 5

8 INFANTILE SPASMS AWARENESS IS AWARENESS WEEK 2016 AND BEYOND As a convenor of partners in care in the child neurology community, CNF s contribution to Infantile Spasms Awareness began by hosting the inaugural Infantile Spasms Advocacy Forum, where representatives from 5 membership bodies, 7 advocacy organizations, and 3 industry partners met to discuss how a collaborative initiative to raise IS awareness could contribute to improved outcomes for early and accurate diagnosis and treatment of this rare form of epilepsy. As a result: 16 national organizations came together as partners for ISAW 2016 a tiered-needs assessment was conducted to determine the accumulated resources available to advance IS awareness partners reconvened during ISAW at the AES meeting to discuss 2017 shared initiatives 2016 ISAW Partners 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 Additional ISAW Info The American Epilepsy Society CURE Danny Did Foundation Lennox-Gastaut Syndrome Foundation Global Genes Tuberous Sclerosis Alliance Seizure Tracker RARE Science Lundbeck Mallinckrodt Novartis ACHIEVEMENTS

9 ABOUT THE INFANTILE SPASMS ADVOCACY FORUM This meeting should have happened years ago. It s been a long time coming. Thank you, CNF! If anyone was going to bring this group together, it would be CNF! 7

10 INFANTILE SPASMS AWARENESS $30,000 AWARDED IN INFANTILE SPASMS AWARENESS BUILDING MINI-GRANTS To spread awareness of infantile spasms, the Child Neurology Foundation awarded six mini-grants for advocacy awareness projects to the following foundations and organizations: American Academy of Pediatrics Resources: Patient Care Online (PCO) Webinar Infantile Spasms: What Parents Need to Know Parent Coach: Infantile Spasms Awareness Parent Perspective Project Outreach to patient/caregiver community via social media, meetings, and RARE Bears program ACHIEVEMENTS

11 Lennox-Gastaut Syndrome Foundation Literature Review and Dissemination of Infantile Spasms History in Lennox-Gastaut Patients Danny Did Foundation IS Awareness Building with the SUDEP Community view organization Seizure Tracker Seizure Success and You IS webpage and Dissemination view organization American College of Emergency Physicians American College of Emergency Physicians e-cme Educational Module view organization 9

12 2016 INFANTILE SPASMS HEROES AWARD DR. STEVEN COKER Dr. Coker was nominated by the Williams Family for his outstanding care of their son, Emmett. The fact that Dr. Coker has been in practice and treating IS for forty years is evident, as is his passion for doing so No matter what ends up happening with our Emmett, we know he is in the absolute best hands. Dr. Coker is truly our hero, and we feel that he couldn t be more deserving of this award ACHIEVEMENTS

13 CNF contributes to the need for Hope within the child neurology community by recognizing exemplary contributions to care. 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. Many thanks to the Williams Family for sharing their story and taking the time to honor Dr. Coker and his staff! 11

14 BRENDAN MICHAEL HARNETT INFANTILE SPASMS MINI-GRANT Each year during ISAW, a $1,000 mini-grant is given to a child with IS to assist his or her caregivers to cover the cost of medical devices, treatments, and therapies not covered by insurance. CNF is privileged to contribute this support as a testament to families that There is Help! There is Hope! Learn more about Brendan Harnett and this mini-grant given in his honor by clicking this button: Brendan s Story THIS YEAR, ROBBIE AND HIS FAMILY WERE AWARDED THE MINI-GRANT, 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 We also are getting switched toys for the first time ever which is very exciting. We appreciate the support from our IS community more than words can express ACHIEVEMENTS

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16 MEDICAL CANNABIS IN EPILEPSY CME SYMPOSIUM AT THE CHILD NEUROLOGY SOCIETY ANNUAL MEETING In order to gain a deeper understanding of the current science, family experience and advocacy efforts, CNF convened thought leaders from clinical science and advocacy groups to discuss medical cannabis as a treatment for intractable epilepsy during its annual symposium at the 2016 CNS convention. The CME was attended by 240 child neurology professionals. Click the button below for more details about the CME Symposium CME Symposium Info Pre-CME Surveys of Providers and Caregivers to Understand the Treatment Chasm Survey to Child Neurology Society members received 167 responses. The survey to parents and caregivers identified through several advocacy groups received 479 responses. CNF asserts the critical value of child neurology professionals and parents working as partners in the delivery of quality care to every child. Unto that end, all of our educational modalities are interdisciplinary and bring these three stakeholder groups together to educate one another. We believe this is a vital contribution to the child neurology community, as it addresses the chasm often existing between these groups in regards to key issues, such as treatment options, services and goals of care ACHIEVEMENTS

17 After attending the symposium, over 50% of attendees reported they have an improved ability to: Explain the differences between medical cannabis, CBD, marijuana, and hemp to patients and/or colleagues Explain the current state of science, research, and clinical trials related to medical cannabis Communicate with patient families to openly communicate about their decision to treat their child with medical cannabis ATTENDEES HAD THIS TO SAY ABOUT THE SYMPOSIUM After attending CNF s symposium, I am certainly more equipped to speak intelligently on the matter of medical cannabis, and can offer better counseling to patients. Very informative, but also motivating. Seamless blend of data and personal testimony. Very engaging. Hot topic; so great to hear from experts and families. 15

18 CNF PROGRAMMING FEATURED AT 7 MEDICAL AND ADVOCACY NATIONAL CONFERENCES 1. American Academy of Neurology 2. Tuberous Sclerosis Alliance 3. Lennox Gastaut Syndrome Foundation 4. Child Neurology Society 5. American Epilepsy Society 6. Global Genes 7. PVNH Support & Awareness 8. Epilepsy Awareness Day at Disneyland ACHIEVEMENTS

19 BOARD OF DIRECTORS More than half of the members of our Board are child neurologists. They are joined by child neurology community advocates and parents. Who We Are Strategic Retreat Refined Mission: To serve as a collaborative center of education and support for caregivers and their children living with neurologic conditions. Click here to download our five-year strategic plan Strategic Plan Established 3 Strategic Drivers with Accompanying Programs and Objectives 17

20 INTRODUCING THE PEER-TO-PEER PARENT COACH PROGRAM The parent coach program contributes to the child neurology community by providing an experienced, compassionate peer partner for parents navigating the journey of disease diagnosis, treatment, and management for their child living with neurologic diagnosis so that no parent, caregiver, or child ever as to walk alone. What do those assisted have to say? Thanks for replying to our inquiry. We respect and admire you for helping other parents going through this. Thank you for going forward, continuing on that journey and being a light to healing for others. I admire your courage and appreciate the message you share with your story thank you from a mother s heart ACHIEVEMENTS

21 CHILD NEUROLOGY COMMUNITY EDUCATION Hosted 2 Webinars with Partnering Providers, Caregivers, and Advocates view webinars Expanded the Child Neurology Disorder Directory from 20 to 25 Disorders view directory Quarterly e-newsletters view newsletters International Distribution of Disease Education Resources Over 500 Spanish and English Infantile Spasms infographics given in 2016 alone. 19

22 SOCIAL MEDIA GROWTH To serve as a collaborative center of education and support, we ve dedicated time and resources to increase our social media presence as a way to further communication amongst the members of the child neurology community and contribute to the strengthening of connections between the various stakeholders. Their metrics show exponential growth in patient/caregiver outreach online. CNF Social Media Followers on 3 / 22 / 16 CNF Social Media Followers as of 11/21/ ,000 11,000 13,557 10,681 Followers Unsure Followers 3,000 2, ,607 1,977? 2, ,497 Instagram Twitter Facebook Instagram Twitter Facebook ACHIEVEMENTS

23 TRANSPARENT BUSINESS OPERATIONS The Child Neurology Foundation has achieved a Platinum GuideStar rating for our transparency as a Non-Profit Organization! CNF GuideStar Link Allocation of Expenses Advocacy Partner Collaboration Growth fundraising administrative 21% 9% 70% programming Join us in continuing these contributions for the child neurology community, please think about supporting CNF via: Number of Advocacy Partners Year smile 21

24 CHILD NEUROLOGY FOUNDATION CORPORATE ADVISORY BOARD (CAB) CNF appreciates the support it has received in 2016 from individual friends, private foundations and our Corporate Advisory Board childneurologyfoundation 2016 Child Neurology Foundation December 2016