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Huntington's Disease Youth Organization

Chandler's Mid-Atlantic HD youth service update

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

www.hdyo.org

March 30, 2015

HDYO News

I’ve been with HDYO just over a year so it seems fitting to take some time and reflect back. One thing I can say with certainty at the end of year one is the HD community is the strongest, most passionate, most welcoming and fun communities I have ever been privileged enough to be a part of.

I’m hoping to connect with a lot more young people and provide any needed support for families in the area.

I look forward to continuing to grow this project and provide such valuable service to the young people in the mid-Atlantic region and around the US. I have learned so much and grown personally and professionally in this year. I’m thankful every day to be a part of such and amazing team and work with people who are so full of passion for what they do. Everyday I’m inspired by the families I connect with and the enthusiasm of the HD community as a whole. Thank you to HDYO for giving me this opportunity and thank you to the HD community for welcoming me with open arms.

And thank you for reading!

The journey this past year has been amazing and I am going to do my best to put it all into words. I’m a big believer in going with your gut and when I read the posting for the HDYO Youth Worker position I just had the feeling that this was THE job for me. I had been searching for a position for months and nothing had felt right. Sure, there were great positions with great agencies, but nothing seemed like it was where I was supposed to be. I was nervous about applying because I didn’t have a connection to the HD community and only knew the basics about it. I did know that I was passionate about working with young people, empowering them to do the great things they were meant to do and was well-trained in that area. I applied immediately and was ecstatic when I received an interview.

I remember walking into my interview and being a bit intimidated (there were 5 people there to interview me!), but, by the end, that feeling I had when reading the posting had only intensified. I had spent the better part of a week leading up to the interview prepping the “perfect” Powerpoint to try to wow them. I wanted to prove not only that I was the best candidate for the job, but also how much I truly believed in the power of young people. I guess it worked!

Chandler

I have spent the past year working to get the youth service up and running. This entailed meeting families in the mid-Atlantic region, letting them know about the project and providing them an opportunity get to know me. Understandably, it takes a lot of trust for a parent to let some stranger come in and work with their children. I have met with families at HD clinics in the area, local support groups, and HD events. The idea of a dedicated youth worker is a very new concept here in the US so I’ve been working hard to show the families the positive impact on young people when they have their own source of support. After a year I feel we have been able to accomplish that goal. The clinics have been happy to provide their families with an additional source of support. Families are beginning to gain an understanding of the role of a youth worker and the benefits for specific youth support.

The families and young people I’ve connected with have expressed that they appreciate the service. I work with each family differently and try to cater the service to what each family needs and wants. As someone who has worked with families for years in different settings I can’t say enough how great it is that each family can tailor the service to fit their needs. The last thing a family needs is to feel burdened by something that is put in place to support them. The ways in which HDYO is able to connect with young people (in person, at events, via social media and our website) is incredible.

Chandler

As we head into year two of the project things are really starting to get exciting. HDYO is partnering with HDSA to host the first North American HD Youth Camp in August. I truly believe this will be a life changing experience for the young people who are able to attend and something we hope to make an annual event to reach as many young people as possible. The youth service is also already gearing up to host a number of local events for the families in the mid-Atlantic region. An event was just held in the DC/Baltimore area and two are planned for Lynchburg, VA and Richmond, VA respectively. I’m also hoping to connect with a lot more young people and provide any needed support for families in the area.

I look forward to continuing to grow this project and provide such valuable service to the young people in the mid-Atlantic region and around the US. I have learned so much and grown personally and professionally in this year. I’m thankful every day to be a part of such and amazing team and work with people who are so full of passion for what they do. Everyday I’m inspired by the families I connect with and the enthusiasm of the HD community as a whole. Thank you to HDYO for giving me this opportunity and thank you to the HD community for welcoming me with open arms.

And thank you for reading!

Chandler Swope
HD Youth Worker
HDYO

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