EXECUTIVE BOARD

Jim Johnson

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Jim Johnson, President, is a seasoned digital media, software executive and a serial start-up entrepreneur. Currently Jim is the managing partner for UX Magazine, the leading digital publication for user centered design professionals with over 100,000 subscribers. In his leadership role at UX Magazine, Jim is responsible for growing the reach of the company by working with organizations in the experience economy and expanding business operations.

Prior to his current role, Jim served on the executive management team at the digital agency EffectiveUI. During his five year tenure as Vice President of Business Development and Client Services the company tripled its revenue and had a successful exit with a sale to WPP – the world’s largest communication services company.

Previous executive management roles include running product management for local search technology pioneer Local Matters and leading the software development team for start-up Teach.com -later acquired by Ernst & Young. Originally a programmer, Jim has held diverse roles running sales, product management, design and development teams. Jim has worked closely with Fortune 500 companies Boeing, FedEx, Disney, Intuit, Fidelity and Cisco providing consulting and strategy on their digital properties.

Jim and his wife Scotty live in Denver, Colorado with their 9 year-old son and 4 year-old daughter. After their daughter Harper was diagnosed with KCNQ2 epilepsy, Scotty and Jim became very passionate about making a difference by spreading awareness and finding treatment options for the condition. As part of this mission, Jim and Scotty established the KCNQ2 Cure Alliance in collaboration with other parents with children afflicted by the condition.


Sara James

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Sara James, Vice President, is an Emmy award-winning correspondent who covers Australasia for the US Today Show. Before moving to Australia in 2008, Sara reported for Dateline NBC on the Taliban of Afghanistan, modern slavery in Sudan, the Bosnian War Crimes Tribunal, and 9/11 in her hometown of New York. Sara also served as substitute anchor on the Today Show news desk. An American in Oz is her third book. Sara’s fortnightly featured commentary by the same name debuts on ABC News Breakfast in January. She and her Australian husband Andrew Butcher live in the Macedon Ranges near Melbourne with their two daughters.


Caroline Loewy

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Caroline Loewy, Treasurer, is an accomplished biopharmaceutical and financial executive with over 25 years of experience in the field. She currently provides strategic advisory services for development-stage biopharmaceutical companies focusing on product pipeline evaluation, funding strategies, and business development. Caroline has held the position of Chief Financial Officer of both public and private biopharmaceutical companies, successfully raising over $300 million in capital to advance the development of products for rare or unmet medical needs. Prior to her roles in company management, Caroline spent 11 years as a senior biotechnology equity research analyst at Morgan Stanley and Prudential Securities. While on Wall Street, she was recognized by the Wall Street Journal and Institutional Investor for her ability to identify promising biotechnology companies and raised over $4 billion for companies she covered.

Caroline has leveraged her experience in the medical arena and financial expertise to benefit those affected with rare disorders. She is a founding board member of the Global Genes Project, one of the leading rare disease patient advocacy organizations in the world, and Treasurer of the KCNQ2 Cure Alliance Foundation. She and her husband, Gregg Alton, live in the Silicon Valley along with their five children.


Scotty Sims

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Scotty Sims, Secretary, has her Masters in Counseling and Education from Louisiana State University. In her current role as a crisis therapist, she provides support and assessment to children and adults with severe and persistent mental illness. Prior to her 15 years at Jefferson Center for Mental Health in Colorado, Scotty was a forensic interviewer, specially trained to interview children who were victims of sexual abuse, for law enforcement, child protection and the court system in the state of Louisiana.

Scotty is also the parent representative on the program committee board for Sewall Child Development Center, a school committed to inclusion. Special needs children learn side-by-side with their typical peers to foster a positive learning environment.

After her daughter Harper was born and diagnosed with KCNQ2 EIEE7, Scotty started the KCNQ2 Parent Support Facebook group to provide guidance for families struggling with a diagnosis of KCNQ2. The KCNQ2 Parent Support group now hosts 200 plus families from around the globe. Within this group, Scotty is tracking demographic and medical information on the families of affected children, which has been used to connect parents, clinicians and scientists.

Alongside her husband Jim, Scotty hosted the first annual KCNQ2 Summit with over 20 families traveling from around the world. This summit allowed families to meet firsthand with scientists and clinicians with a specialty in the disorder. Scotty and Jim founded the KCNQ2 Cure Alliance, of which she is the Secretary, with the support of other parent representatives.


Patrick Roberts


Patrick Roberts is an English as a Second Language teacher in Fairfax County, Virginia. He has been teaching since 2005, focusing on literacy and cognitive development. His daughter Lucy was diagnosed with KCNQ2 epileptic encephalopathy at two months old. He and his wife Megan Roberts love taking Lucy for walks, swinging at the park and finding ways to make her smile and laugh. He is pleased to serve as parent representative on the KCNQ2 Cure board to raise awareness about KCNQ2 and work with families to share their experiences. He was born and raised in upstate New York but has also lived in Seattle, New York City, Washington, D.C. and Santiago, Chile. He and his family now live in Takoma Park, Maryland.