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Owning Alport syndrome Through Education and Community

In response to requests for more face-to-face interaction with other families affected by Alport syndrome, ASF hosted several Alport Family Meetings in 2016, now known as Alport Connect Together (ACT) events. Participants left feeling empowered and connected to the Alport community.

ASF asked Teen/Young Adult program co-director Ryan, and participants, Rachel (20) and Drew (13), to share their St. Louis family meeting experiences.

With two meetings down and one to go, it is the perfect time to reflect on just how amazing the first two meetings were. So many new faces all coming together for one common goal: conquering Alport syndrome! As I’ve said before and I’ll continue to reiterate, you can’t lose when you rally together and join forces. No battle was won with one individual. It takes an army and the ASF family is one tough army…a growing community of amazing families, doctors and most importantly, those affected by Alport syndrome.

Spending two weekends with Alport syndrome youth inspired me more than they’ll ever know. Watching them arrive unsure, hesitant and with a plethora of questions swirling around in their minds is my motivation to participate. We spend two days together in a relaxed environment where any question is welcome and all are answered. We do so through education, experiences, laughter and a commonality that makes our bond unbreakable. Watching our young adults leave inspired, educated and ready to tackle all that comes their way is heartwarming. Knowing they will move forward in life with their head high, letting no obstacle stop them leaves me with a great deal of gratitude. I know they #OwnIt!

If you haven’t been to an Alport Family Meeting yet, you are missing out. And more importantly, we are missing you! Remember, we win in numbers so do what you can to make it to Hackensack, NJ for the final 2016 Alport Family Meeting. You’ll be glad you did!

My weekend spent at the Alport Family Meeting was one that I will likely never forget. As a sibling of someone who has Alport syndrome, I attended this conference in hopes of getting a better understanding of the disease. My brother was diagnosed when he was about four years old and ever since then it has been a journey of highs and lows for my family in uncovering all that comes with this disease. I knew this weekend would be beneficial for us, but I never imagined I would thoroughly enjoy it as much as I did.

From the moment we arrived there, my family and I were extremely welcomed by everyone from the Alport syndrome Foundation. We had never attended anything like this and were a bit nervous, yet those nerves quickly faded. We were welcomed the first morning by a complimentary breakfast and lots of smiles. After separating into two groups of adults and young adults, the education began. ASF had extremely intelligent people come and talk to us about Alport syndrome, such as dieticians, a pediatric nephrologist, a social worker, an audiologist, transplant patients who also have Alport syndrome and so on.

Part of what made the experience so special was that everyone who was there faced or faces the same struggles. The members of the Foundation made it their goal to bring all of us together to “own” – the theme of the weekend – this disease. As a sister who constantly worries about her brother’s future, this family meeting really reassured me. It showed me when people come together to learn about and face this as a community, it can make the process so much easier. My family is very grateful for this experience. I highly recommend this conference to anyone who is impacted by this disease. I promise you will leave feeling much more confident and well-equipped to face Alport syndrome.

I learned lots about Alport syndrome like what types of food and drinks are good for the kidneys. I also learned what things Alport syndrome affects in the body like hearing, kidney function and sometimes eyesight. Our youth group even learned what kind of things they test at the labs. I think other kids should go because it’s a fun learning experience and kids with Alport syndrome can come and meet others that are going through the same thing they are. Parents can come to learn more about their child’s disease and ways they can help. Plus, you’ll all become part of the Alport syndrome Foundation community!


View images from Alport Family Meetings on Flickr.

All members of the Alport syndrome community are encouraged to register with ASF to learn about upcoming gatherings, news, community engagement opportunities, and support programs.