Finding a Voice

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Teens Take Charge Hydrocephalus ConferenceDo you recall the first National Conference on Hydrocephalus you attended? Or are you wondering what your first experience will be like? No one describes the feeling of what it is like to attend better than our teens…  Madeleine’s post this past week (a MUST read!) galvanized 2 teens living with hydrocephalus and one sibling to write in and share their first conference experiences.

“The 12th National Conference on Hydrocephalus was definitely an experience that changed my life for the better. Being surrounded by so many people who understood where I had been and the struggles I had encountered, was beyond incredible. One of the greatest parts of conference was that I was finally able to meet my fellow Teens Take Charge (TTC) members in person. I know these friendships that I made will last a lifetime. We still talk when we can, and it feels like not even a day has passed since we last saw one another. They are truly a second family for me, and for that I am eternally grateful. Everyone at the HA’s conference was super supportive of one another, and this experience was one of the few times in my life when I can say I felt completely comfortable being myself. I was fully accepted by others exactly as I am. All of the people at the conference were like my “hydro” brothers and sisters. The informative seminars and fun events made each day unforgettable. Are you considering attending the 13th National Conference on Hydrocephalus in Portland, OR, July 9-11, 2014? If you have the chance, I encourage you to attend. It will be an incredible experience of growth, learning, camaraderie and a whole lot of fun!”

– Ashley Snyder, Teens Take Charge Advisory Council Member

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“The 2012 National Conference on Hydrocephalus held in Bethesda, MD, was an amazing event, and thinking about what it means to me gives me a lot to consider. I found a new sense of belonging in the unique friends that I met and made at conference. The friends that I made quickly became my family. I now love to refer to them as my “hydro family.” My fellow Teens Take Charge (TTC) Advisory Council members and I were given the opportunity to speak in front of the community during the Breakout Session, Teens Take Charge: A Panel with the Advisory Council. I was also able to participate in the Intergenerational Panel at the end of conference. The Hydrocephalus Association held an Advocacy Day and as part of it I was able to meet with Senator Barbara Boxer (D-CA). Those opportunities to advocate not only for myself, but also for the community and the cause, were remarkable. Together, we were raising awareness and making a difference. So, coming back to what the Hydrocephalus Association’s conference means to me, conference is a sense of belonging. Conference is where I found my voice.”

– Wyatt Barris, Teens Take Charge Advisory Council Member

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“Attending the Hydrocephalus Association’s Conference in 2012 was something that I had been anticipating for over a year. I had ridiculously high hopes. Amazingly, conference lived up to all of them. It provided me with opportunities that I had never gotten before throughout my entire life. After talking to members of the HA’s Teens Take Charge (TTC) program for over a year, I finally was able to meet my TTC family, and they were great. The first night we gathered to have dinner together, and immediately I felt like a fully included part of a phenomenal group. Not only did we have a ton of fun and make some great memories, but we got to talk in a way that nobody else could really understand. In breakout sessions or just on our own, people with hydrocephalus, including my brother, Brady, were able to meet other individuals affected by the condition, who can really relate. I was surprised to learn how similar the feelings of other teens with siblings who had hydrocephalus were to my own. Once we connected and began to get to know one another, have some fun, and learn new things, we had the opportunity to lobby on Capitol Hill. Not only did I get to personally make a difference for a cause that me, and all the conference attendees, cared about so much, but I also discovered that I am seriously interested in pursuing lobbying and social justice as a career in the future. Since the conference, I have attended a leadership conference in Washington, D.C., where I had the opportunity to return to Capitol Hill and lobby for better disability rights in the U.S. Overall, the conference not only gave me more insight into the world of the hydrocephalus community, but I met amazing people and learned new things about myself.”

– Megan Rivkin, Teens Take Charge Advisory Council Member

For more information on conference and to register, please visit www.hydrocephalusconference.org. We hope to see you in Porland!

Teens Take Charge Advisory Council

Teens Take Charge Advisory Council

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