{"id":40168,"date":"2026-01-29T17:56:26","date_gmt":"2026-01-29T22:56:26","guid":{"rendered":"https:\/\/www.hydroassoc.org\/?p=40168"},"modified":"2026-01-29T17:56:26","modified_gmt":"2026-01-29T22:56:26","slug":"ha-connect-where-i-found-lifelong-community","status":"publish","type":"post","link":"https:\/\/www.hydroassoc.org\/ha-connect-where-i-found-lifelong-community\/","title":{"rendered":"HA CONNECT: Where I Found Life-changing Community"},"content":{"rendered":"

My name is Carly, I\u2019m 27 years old, and I was diagnosed with hydrocephalus at one month old<\/a>. I\u2019ve had 20 brain surgeries, 14 of which were shunt revisions<\/a>. When I was in my junior and senior years of high school, I had six revisions within six months.<\/p>\n

Prior to these revisions, I never really worried about my hydrocephalus, when the next brain surgery would be, or truly knew anyone with hydrocephalus except for a family friend. When I started having frequent revisions within a short period of time, I felt alone. I didn\u2019t have anyone in my life who understood what I was going through.<\/p>\n

After experiencing these revisions, I learned about the Hydrocephalus Association (HA). Through HA, I started a WALK<\/a> for the Jersey Shore community and became a Community Network<\/a> Leader for New Jersey. Slowly, I started to find my community and where I felt like I belonged. When COVID began, we started having meetings virtually, and I gradually started to build friendships with others who have hydrocephalus like\u202fme.<\/p>\n

\"CarlyIn 2022, I attended my first National Conference on Hydrocephalus, HA CONNECT<\/a>, in Austin, Texas. At HA CONNECT, I built stronger relationships with those I already knew from the WALK community and virtual meetings. It was an experience that I\u2019ll never forget because I finally had the opportunity to meet my virtual friends in person, like Genesis, who has become one of my best friends. If it wasn\u2019t for HA CONNECT, I don\u2019t know when we would have met. Our bond has grown tremendously. I don\u2019t remember a time when we didn’t know each other. I truly don\u2019t know what I would do without her.<\/p>\n

\"Carly<\/p>\n

During this conference, I also got to grow my bond with Lindsey, a fellow WALK chair, her daughter Taelley, who has hydrocephalus, her two siblings, and Lori, who is also a WALK chair. I first met Lindsey and Lori during WALK training, but getting to know them better and spending time together at the conference is what truly created lasting memories\u2014ones I will never forget.<\/p>\n

When we planned our trip to attend HA CONNECT in 2024 in Tampa, Florida, we automatically knew we wanted to plan excursions together before attending the conference to spend more time with one another. Our friendship and bond are so strong that Lindsey, the kids, and I visited Lori and her husband, Mitch, last Summer, and we already have plans for our next adventure together. Lindsey, Lori, and I have built such a strong bond that we can have open conversations about anything with no judgment.<\/p>\n

\"CarlyDuring the HA CONNECT 2022, I also got to meet Tina for the first time, and from the moment we met, we were linked forever. Not only do we both have hydrocephalus, but we also live in the same state, which has allowed us to spend time together more often, not just at the conference.<\/p>\n

HA CONNECT is truly like an enormous family reunion. Every two years, you get to see the friends you\u2019ve made, and you pick up where you left off. It\u2019s as if no time has passed at all! If you have never been to an HA\u2019s National Conference before, you will leave with lifelong memories and friendships. Being in a place where everyone understands what you\u2019ve been through is an amazing feeling. I don\u2019t know where I\u2019d be if it weren\u2019t for HA CONNECT! I\u2019m looking forward to the 19th National Conference on Hydrocephalus this summer in Indianapolis, Indiana!<\/p>\n\r\n

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