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Pexels 697243 hug talkAbout HDYOKTYPJPThe Huntington's Disease Youth Organization is an international non-profit supporting, educating, and empowering young people up to 35 years, impacted by Huntington's Disease (HD).View our definitions of young people and impacted by HD.Our aim is to provide a safe place to support, educate & empower young people & their families. We do this through a number of online and in-person resources.SupportOur mission is to make sure that no young person has to suffer the impact of Huntington’s Disease alone. We have support groups where you can have conversations with other young people who know...Find out more...
Financials and ReportsEveryoneOur FinancesSince its founding in 2012, HDYO has maintained strong growth and financial stability. This is thanks to the generous contributions of our supporters and tireless work by the staff, board and community. Each year we implement crucial programs to support young people and families impacted by HD.Please explore our latest annual report for details on all our fundraising and programs.Where Do The Funds Go?HDYO provides unique and important programs to support young people and families in the HD community across the globe. Learn more! How We Are FundedOur work is funded by a mix...Find out more...
Art pexels boardHDYO TeamKTYPJPStaffOur dedicated staff is made of passionate individuals who are here to help in any way we can. Please feel free to reach out to us directly. Jenna Heilman Executive Director jenna@hdyo.org Matt Ellison Project Coordinator and Founder matt@hdyo.org Rebecca Mason JOIN HD Study Coordinator, Juvenile Onset Huntington’s Disease Registry rebecca@hdyo.org Jenna Shea Project Coordinator jen@hdyo.orgBoardYou can learn more about the board on our biographies page. Hayley Hubberstey Executive Board, European Chair hayley@hdyo.org Rudolf H Schaffrath Executive Board,...Find out more...
Pexels fauxels 3184437Who We ServeEveryoneHDYO’s Definition of young people:Kids: 12 & under Teens: 13-17 years old Young Adults: 18-35 years old HDYO’s Definition of impacted by HD:At-Risk for HD Gene Tested with positive or negative result Caregivers who may or may not be at risk. Those not at risk who have loved ones, friends with HD Juvenile onset HD Pediatric HD Professionals working with families impacted by HD. We are an official entity in both the USA (501c3 EIN: 45-4955538) and United Kingdom (Charity Commission #1145781). Learn more about our charitable status.Find out more...
Pexels 3808904 typewriterTranslator TeamKTYPJPHDYO’s mission is to support young people affected by Huntington’s disease all over the world. In order to provide support, HDYO produces a huge amount of informative and educational content for young people and their families affected by Huntington’s disease. All of this content has to be translated into as many languages as possible to ensure that young people have access to the information that may help them live positively despite Huntington’s disease being in their lives. The translations for HDYO are done by the HDYO Translator Team, which consists of many people who share a desire to...Find out more...
Pexels 461049 familyContact HDYOKTYPJPEmail info@hdyo.org for any general inquiries, comments or questions.Ask a question Do you have any questions about Huntington’s disease that you’ve always wondered about? Well here’s your chance because HDYO has gathered a panel of Huntington’s disease experts to answer any questions you may have. Feel free to send any questions you have using the email below and we will forward it to who we feel is the appropriate expert to answer your question. You are asked to provide a name, age, country and email address. We would appreciate it if you gave your correct age, location and email address....Find out more...
Pexels 54300 dandelionPrivacy PolicyKTYPJPHDYO Website Terms Of Use and Privacy PolicyPrivacy PolicyThis privacy policy sets out how HDYO uses and protects any information that you give us when you use this website and through our official Social Media Pages.HDYO is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified when using this website or Social Media pages, then you can be assured that it will only be used in accordance with this privacy statement.What we collectWe may collect the following information:First and Last Name Contact information...Find out more...
Pexels photograph 2179205Sharing, Licensing and Reusing HDYO ContentKTYPJPOne of HDYO's ambitions is to spread high-quality, educational information for young people impacted by Huntington's disease around the world. Therefore we actively encourage individuals and organisations to use HDYO material. HDYO's content has a Creative Commons License which allows individuals and organisations to use HDYO material freely for personal and non-commercial uses. Most of HDYO's content can easily be downloaded or shared. If you want to use HDYO's material on your individual or organisation's website, then you may do this without need for permission from HDYO - however, we...Find out more...
Art pexels boardBiographiesJenna Heilman - Executive Director Over the past 15 years, I have enjoyed leadership roles in both the non-profit and for-profit sectors, developing a reputation for strategic thinking and planning. I quickly found out that my heart belongs to non-profit life. I recently left the Executive Director position at the Head for the Cure Foundation whose mission is to build awareness, raise funds and ignite hope for the brain tumor community. When I started in 2017, HFTC had hit a plateau for fundraising and staff bandwidth. Over my four-year tenure, we restructured the foundation to allow for...Find out more...
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