Planning is well underway for our 13th National Conference on Hydrocephalus, which will be held in Portland, Oregon, from July 9-11, 2014. Leading up to the event, parents, teenagers, medical professionals and other individuals in our community are taking a moment to reflect on what it means to attend a conference. This week, Madeleine Darowiche, Teens Take Charge (TTC) Advisory Council Member, shares her favorite memories from her first conference. HA: How many National Conferences on Hydrocephalus have you attended? MADELEINE: I have attended one conference. It was the most recent one held in Bethesda, MD. This event made such a difference in my life, so I certainly plan on attending more in the future! HA: What is your favorite memory from the conference? MADELEINE: Despite the fact that I have only attended one conference, I have so many favorite memories. It was amazing to realize for the first time I was not alone. I loved being able to make special connections that I will have for a lifetime. I’ll never forget the Teens Take Charge (TTC) session. All I can remember thinking after the first few minutes of listening to Jennifer (Bechard) Johnson and the TTC advisory council members speak was “Wow, I really want to be a part of this program.” As soon as the session ended, I went up to Jennifer and asked, “How can I become involved?” She replied that I could do a guest blog for TTC, and I was so thrilled to be able to share my story and experiences. Soon after, Jennifer gave me the opportunity to do a monthly blog, and I jumped at that chance. I have now been doing them ever since. After about a year of writing the blogs, Jennifer invited me to join the Teens Take Charge Advisory Council. I was so honored and excited to join, I could not type my response fast enough! HA: Why do you feel HA’s national conference is so important? MADELEINE: I feel these conferences are important because they provide an insight to the hydrocephalus research that is being done. They create a great sense of community and do wonders in so many aspects of hydrocephalus, from raising awareness on a national advocacy level to increasing the possibilities of funding more research. Also, from my perspective as a teenager, I think they help us discover that there are people who know exactly what we have been through, and we do not have to explain anything. I feel it is important for teens to attend because teens often struggle with fitting in, and having a medical condition can just make it more difficult, but at the conferences, it is almost like no one has to make any extra effort to fit in. Everyone is just so kind, understanding, and welcoming. HA: What topics would you like to see covered in the educational program at the next conference? MADELEINE: I think an important topic would be sessions on the conditions that cause hydrocephalus, as well as problems that can arise as the result of hydrocephalus. Also, I feel more awareness needs to be done in the medical community itself, as sometimes doctors may not know to look for hydrocephalus, nor do they know about all of the different shunt options available, as well as alternative methods of treatment. HA: Do you feel attending the conference has made an impact on your life? If so, how? MADELEINE: One thing I gained from the conference was confidence. The whole experience was remarkable. I can honestly say that I would not be the person I am today had I not attended HA’s National Conference. I left feeling inspired, and had a burning desire to make a difference in the hydrocephalus community. It changed me in ways I never thought possible. The conference gave me the courage to speak fearlessly and confidently about hydrocephalus and its effects, as I had always been rather hesitant to discuss my condition. It made me passionate about advocating for hydrocephalus and volunteering with the Hydrocephalus Association (HA) locally. And now, about a year and a half after the conference, I am still marveling at how much I grew as a person because of it. Never, did I think I would be as involved as I have become. HA: What would you tell others when encouraging them to attend? MADELEINE: You will not be disappointed in your experience. It will be amazing and unforgettable! If it will be your first conference, your only regret would be that you had not attended one sooner. You will also leave with a better understanding of how to live with this chronic condition. HA: What would you like to say to those involved in organizing the conferences? MADELEINE: Thank you so much for all the work that you put in to making these events amazing! It means the world to me. You will never know how much gratitude I feel towards each and every one of you! It is truly appreciated!
Penguins Unite to Fight Hydrocephalus
2 Jul 2015
WNYT Albany Raises Hydrocephalus Awareness
30 Jun 2015
Research 101: The Importance of Sample Size
25 Jun 2015
How Can We Serve You Better?
24 Jun 2015
MINNEAPOLIS: We are on our way! 2016 Hydrocephalus Conference
5 Jun 2015