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HDYO US Youth Service

March 1, 2019

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


HDYO US Youth Service

You can make a referral by filling in this form.

The HDYO US youth service is for young people impacted by HD across the US and can be accessed virtually or in-person depending on your location. The youth service consists of one full-time HD youth worker (a social worker with vast experience working with young people), this youth worker is employed by HDYO and is based at the Georgetown University HD clinic in the mid-Atlantic region of the US. The youth worker is available to provide support to young people across the US via phone, e-mail, text and video calls. Young people can schedule weekly or monthly times to speak with the youth worker in a format that they are most comfortable with or reach out any time. The youth worker can also provide virtual support for families via video conferencing to talk about HD as a family and provide support to parents if HD is new in the family.

This HDYO project is funded by the Griffin Foundation and MedStar Georgetown University Hospital, and supported by HDSA.

What is a HD youth worker?

A HD youth worker is a professional who is there to provide support especially for young people impacted by HD and their families.

Meet Chandler

Chandler Swope, Director of HDYO Youth Services – Mid-Atlantic Region

Briefly tell us about yourself Chandler…

Hi everyone! Over the last few years I have enjoyed working with HDYO to develop the first HD Youth Worker service in the US, in the mid-Atlantic region. The service has been a success since we launched it in 2014 and now we are really excited to expand the youth service across the whole of the US so more young people can receive support or connect with me through the virtual model.

What is the goal of the youth service?

The goal of the HDYO Youth Worker is to connect with young people and their families to provide support, education, advocacy and advice. Our goal is to work with families by providing one to one support and counseling to young people in their homes or community. Also, annually, HDYO partners with HDSA and HSC to offer a summer camp for young people impacted by HD. The goal of this camp is to provide an environment where young people can access peer and professional support along with some time for self-care and respite. Additionally, the youth worker is available to partner with any group for educational events to provide educational session designed and developed for young people.

What are young people and families saying about the service?

“Thank you again for all that you do. Your impact is greater than you know!” – Young Person

“It’s been fabulous. Everyone is so supportive.” – Young Person

“I love working with Chandler and HDYO. My family has been affected by HD and they take the time to hear you and your stories. Chandler and HDYO are awesome and I would not know what to do without them.” – Young Person

What support is offered for young people, Chandler? Support looks different for everyone. Some young people have lots of questions or concerns about HD and what their affected family member(s) may be going through, some are deciding if testing is right for them and other’s just want to talk about what is going on in their life besides HD. I’m here to offer support, answer questions and help locate any needed resources. Young people can communicate in the way that is comfortable to them and the level and frequency of support is determined by what the young person needs. All contact with the service is confidential.

What support is offered to parents? For parents my goals are to be a support to you in the process of explaining HD to your children and educating them on the various aspects of the condition. I will work with each family individually to provide the level of support and education with which they are comfortable. You will always be in control and I am here to help.

What services do you provide?

  • One to one support, information and advice for young people
  • Support, information and advice for parents and guardians regarding the impact of HD on young people
  • Educational opportunities geared at young people
  • Education and support for professionals working with young people impacted by HD

Who do you serve?

  • Young people under 30 years old living in the US
  • Parents and guardians
  • Family members
  • Professionals (social workers, teachers, physicians, nurses, other clinicians…)


HDYO will treat all information that you provide to us as strictly confidential and we will not disclose any information about you to any third party without your permission EXCEPT in the following situations where is may be necessary or required:

  1. It is justified in the public interest to protect individuals or society from risks of deal or serious harm;
  2. We are ordered to do so by a court of law, a judge or other presiding officer;
  3. We are required to under statute to satisfy a specific statutory requirement;
  4. The person may be a victim of neglect or physical, sexual or emotional abuse and lacks capacity to consent;
  5. The welfare or safety of children or vulnerable adults is at stake;
  6. It is necessary for the prevention, detection or prosecution of serious crime, especially crimes against the person;
  7. Threats to third parties are made during any interaction relayed to HDYO staff

Contact Chandler

Whether you are a young person, a parent, family member or professional, you can contact Chandler using the options below.

Chandler Swope, LICSW Director of Youth Services – Mid-Atlantic Region

Phone: 202-674-4848
Email: chandler@hdyo.org
Facebook: Message Chandler on Facebook
Twitter: Or speak via twitter
Skype: chandler.swope