As part of the hydrocephalus community I wear many hats. I volunteer as a Community Network Co-Leader and plan meetings for the Illinois community, collaboratively organize the annual Chicago Hydrocephalus Association WALK, and most importantly I am a parent of a child born with hydrocephalus. As part of that role I’m constantly seeking new information about hydrocephalus to help me understand and assist my son with the many effects this condition has on our lives. Maybe you can relate, maybe you too pursue the quest of figuring out what hydrocephalus means and entails. Maybe you want to better understand how or why hydrocephalus affects family members life or even your own. Probably, you want to know more about the ultimate goal, the Cure to hydrocephalus, however that may look. At the same time, it’s also easy to lose that drive, to let the day-to-day issues interfere with that goal, to forget that we will have this constant struggle. It’s been years since the last surgery or neurosurgeon appointment or IEP meeting, but it’s still there, waiting in the background, lingering in the back of our minds. Or maybe you deal with it everyday and hydrocephalus is never far from your thoughts.
Like any job, it gets challenging. I need to bring new ideas to the WALK or Community Network Meetings. I want to be able to engage the community I serve. I strive to find guest speakers and topics that will interest my community members and assist them in any way I can. But it’s exhausting. I don’t always know what the needs are or the best way to get that information to them. Going to the bi-annual Hydrocephalus Association Conference motivates me. It provides me with new information, research and ideas to help me support the community I serve. It allows me to meet and talk to people within the hydrocephalus community; I hear their stories, suggestions and advice about what has helped them on their path to dealing with this condition.
I’ve attended two conferences since my son was born, one in Washington, D.C. and the other in Portland, Oregon. The first conference we attended in D.C., was so exciting and new. The goal of the conference was to storm Capitol Hill. We reached out to our state representatives and told our story. We talked about the importance of government funding for hydrocephalus, the need to educate the public and support research to find a cure(s). The second conference had a different focus to me: research. We need to find out more about this condition, how it affects different people, how we can treat multiple people, learning about the different research projects the Hydrocephalus Association has funded and really understanding the relevance of them. This year’s conference in Minneapolis, Minnesota, seems to focus on the power of the community. What would it look like if we all worked together as one voice and made hydrocephalus a word that people know and understand and are ultimately interested in curing? I’d like to know! If you would too, I hope to see you at the conference.
And if that isn’t enough, here are TEN MORE REASONS that you should join us in Minneapolis this June:
Katie Cook’s Top Ten Reasons You Should Attend The Hydrocephalus Association Conference
- You will meet people from all over who know how to pronounce hydrocephalus and who actually know what it means!
- You will finally meet face-to-face the people you see and read about on Facebook and who work for the Hydrocephalus Association.
- A Kid’s Camp is available, for those whose kids will behave themselves (unlike mine ☺).
- You will get to hear the latest developments in hydrocephalus research, like the pediatric-focused Hydrocephalus Clinical Research Network (HCRN) and the Adult Hydrocephalus Clinical Research Network (AHCRN) clinical research projects; funded by the Hydrocephalus Association.
- It’s only a six-hour drive from Chicago, making this the closest and cheapest conference from my home in recent history.
- The conference is highly motivating. For me, it gives me great ideas for Illinois Community Network meetings and the annual Chicago Hydrocephalus Association WALK.
- You will get free Hydrocephalus Association gear and materials. A nice way to advertise our cause!
- You will have the opportunity to travel to interesting locales that are family-friendly. Minneapolis, the site of this year’s conference, has a famous Sculpture Garden and the Mall of America, two places I plan to take the time to see.
- Before you travel there is no need to research closest hospital and neurosurgeons in the area; the Conference is filled with some of the best neurosurgeons with HYDROCEPHALUS EXPERIENCE in the world.
- At the conference, you will undoubtedly connect with individuals and families who are affected by hydrocephalus, those who really understand what it means to live with this condition and the challenges our loved ones face.