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The International SCN8A Alliance was co-founded by Wishes for Elliott and the Shay Emma Hammer Research Foundation. The Alliance is family-based non-profit focused on advancing research and providing education and support to families affected by SCN8A and other rare and severe developmental and epileptic encephalopathies (DEEs). My daughter Gabi Conecker and I founded Wishes for Elliott when her son Elliott was born with a rare and catastrophic epilepsy. We have focused on accelerating scientific progress by convening scientists, supporting early investigators, and providing education and support for families. The new Alliance cultivates "citizen scientists" empowering families with better understanding of the science and becoming advocates for improved treatments and outcomes. In partnership with 30+ other rare epilepsy groups, we launched DEE-P Connections to provide well curated information for DEE families and providers. We recently launched "The Inchstone Project" to accelerate improved outcome measures for the most severely affected population to assure their gains are measured and considered in evaluating new treatments. We collaborate with leaders of the epilepsy community to promote policies and funding commensurate with the catastrophic economic, health, and social burden associated with the DEEs. We maintain and seek to expand partnerships with all rare epilepsy organizations, researchers, clinicians, pharmaceutical companies, and public health advocates.
International Scn8A Alliance - Focused On Improving Treatment And Outcomes For D
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Executive Director And Co-Founder Of The International Scn8A Alliance And Dee-P ConnectionsInternational Scn8A Alliance - Focused On Improving Treatment And Outcomes For DWashington, Dc, Us
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Executive Director And Co-Founder Of The International Scn8A Alliance And Dee-P ConnectionsInternational Scn8A Alliance - Focused On Improving Treatment And Outcomes For Dees. Nov 2012 - PresentWashington, District Of Columbia, United States
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Infrastructure Policy, Strategy, And EconomicsIndependent Consultant Jul 2008 - Aug 2012
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Director Of Transportation AdvocacyBipartisan Policy Center Jul 2008 - Jan 2012 -
Director, Physical InfrastructureU.S. Government Accountability Office Feb 1982 - Jul 2008
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Economics Editor, Calendar Of Federal RegulationsU.S. Regulatory Council, Executive Office Of The President 1980 - 1982Washington, District Of Columbia, United States
Jayetta Hecker Skills
Jayetta Hecker Education Details
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Ms - Economics, Foreign Service -
Economics
Frequently Asked Questions about Jayetta Hecker
What company does Jayetta Hecker work for?
Jayetta Hecker works for International Scn8a Alliance - Focused On Improving Treatment And Outcomes For D
What is Jayetta Hecker's role at the current company?
Jayetta Hecker's current role is Executive DIrector and Co-Founder of the International SCN8A Alliance and DEE-P Connections.
What is Jayetta Hecker's email address?
Jayetta Hecker's email address is ja****@****ail.com
What is Jayetta Hecker's direct phone number?
Jayetta Hecker's direct phone number is +120278*****
What schools did Jayetta Hecker attend?
Jayetta Hecker attended Georgetown University, Boston University.
What are some of Jayetta Hecker's interests?
Jayetta Hecker has interest in Social Services, Children, Politics, Science And Technology, Human Rights, Health.
What skills is Jayetta Hecker known for?
Jayetta Hecker has skills like Politics, Transportation, Fundraising, Strategy, Policy Analysis, Statistics, Legislative Relations, Lobbying, Management, Legislation, Team Building, Change Management.
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JayEtta Hecker
Severna Park, Md
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