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This year, we flew out a couple days early, so we wouldn't feel rushed when we got to Phoenix. The flight down was an adventure in itself. Our first flight to Calgary showed me that high altitudes, early mornings, and respiratory issues are not a good combination, but I managed. A brief lay-over in Calgary turned out to be quite fun. Because of accessibility issues, my family and I were able to take a trolley through the airport, which seemed like we were on a tour bus! For the first time ever, I got "randomly selected" and received the full security treatment (yay??). Friendly agents, though. Then, while waiting for our flight to Phoenix, we ended up meeting a younger family from BC who were also heading to the Joubert conference!
We landed in Phoenix that afternoon, and I was blown away by the scenery and how different it was to Ottawa (I'll save all the tourist stuff for another post).
We got to our hotel, The Scottsdale Resort at McCormick Ranch, which was spectacular, and were greeted by friendly faces right away!
That evening, after dinner with our new friends the Willows (the family from BC), we registered for the conference. Again, we were surrounded by good friends who were eager to greet us and congratulate me on becoming the newest board member of the Joubert Foundation (yep, that happened!) And my family got our first official conference photo.
One thing I immediately noticed was how much more social and independent the kids were, especially the older youth. During registration, three teenagers who I've known since the Minneapolis conference weren't the least bit shy about coming up to me and saying hi!
The next day was the first day of the conference. We spent the afternoon shopping to prepare for the rest of the vacation. Unfortunately, I missed the first speaker, one of the teens I mentioned earlier. I did catch up with her and her family later though, and congratulated them. They, in turn, talked me up to a couple other new families which I was grateful for.
Waiting for dinner that evening was a blast, as it meant seeing everyone who had made it in throughout the day.
Seeing all those people was great, but I was most excited to meet and reunite with a couple other affected adults who are pretty good friends, Noldon and Kaci. I had known Noldon since the Chicago conference, and Kaci and I met through the Youth and Adults with JS group I created on Facebook. They had both gotten in touch with me before the conference and it was great to see them and their families!
That night was spent socializing with multiple people in and around the hotel's awesome pool.
Bright and early the next morning, my friend Whitney wanted to get an updated photo of me and her daughter Mackenzie.
After dinner, the conference hosted a group of researchers who focused on Joubert syndrome and cilia, a major part of the body associated with JS. I was asked to attend as an adult, but was also introduced as a new board member by the Foundation's current and former presidents! It was pretty interesting to learn more about the science and genetics and I liked being able to represent the Foundation and others like myself. In turn, the researchers enjoyed being able to meet affected individuals who could be impacted by their studies.
When the cilia fair ended, I attended the Dad's night. I'm not a father, but a lot of the dads there were around my age and we had things in common. It was a fun night and I received a lot of great compliments!
The following afternoon, I was asked to lead a discussion group for the teens and younger adults similar to the one I did in Chicago. This time was different though. First, I had help. Members of the organizing committee asked Kaci to lead the group alongside me. The attendees really liked hearing about her kids and my inclusion on the board. Also, there was a lot more participation and discussion this time around! Topics like bullying and challenges were thrown around, this time without upset. Some people even brought up questions related to Joubert syndrome, like life expectancy, success rates, and the likelihood of having kids with JS. Gave me some ideas for suggestions for the next conference! We finished the discussion off with several random, fun questions like "favourite colour" and "favourite animal".
Afterwards, many of the teens and younger adults came up to both of us to say thanks, ask other question, and give hugs, handshakes, and high fives. When they all left for their next activity, Kaci and I got a chance to socialize for a bit.
Speaking of socializing, that night there was an adult meet-up at the hotel's bar for adults with JS. I had the idea for it, and the organizing committee okay-ed it. Unfortunately, not many people attended. Some went to the Mom's night instead, others were doing things on their own. Great idea, but I've made suggestions for maybe something a little more formal for next time.
The final day of the conference started with my first board meeting. It felt a bit intimidating at first, but by the end I felt way more enthusiastic and I'm looking forward to contributing to the organization and advocating for others with Joubert syndrome.
The conference ended with the dinner and dance. During the dinner, a video called I Am Joubert, featuring many of the kids and adults (including myself) played. Very well done and great idea!
For my help with the teens and adults, I got a thermos mug and a journal as a thank-you from the organizing committee.
After dinner came the dance and tons of photos.
First up were the official family photos.
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| Not sure what I'm looking at in these, but it's definitely not the same thing as the rest of my family. |
Then came photos with our fellow Canadians.
Martine, the woman beside me in black and white, has been following my blog and other exploits for a while and wanted to get a photo of me and her son, Kayden.
Next up were some photos with fellow affected adults.
Kaci and me. We were both more than a little popular throughout the week, and joked that we felt like celebrities.
The two of us with Meghan, a young woman whose mother was one of the first people I met during my first conference in Minneapolis.
Updated photo with Noldon, who quickly got back to cuttin' a rug on the dance floor.
Was so great to have the opportunity to socialize and become friends with other older adults with Joubert syndrome. Highlight of the conference for sure!
I've written about socializing more with some of the younger parents during the week, so I made it a point to get a few photos with some of them, especially the ones who've been so encouraging with my writing and advocacy.
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| I may not know much about outfit coordination, but these are still some of my fave photos of the week. Also, Lane (little dude front and centre)! |
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| I was informed this could look like a double date but really, it's just friends. |
More pretty awesome young guys, Sam and Xaviar.
The final photo went to my friend Amanda, who eagerly ran over to get a selfie the second she saw me and Kaci.
I've known Amanda on Facebook for a while, and always enjoy seeing updates on her little girl Karison, who has JS and is super cute! Amanda considered meeting Kaci and me to be one of the highlights of her conference experience, and that is probably one of my favourite photos from the night.
And that was it. The next conference is in Washington DC, 2019 and I've already made tentative plans to see everyone again!
I've decided to do two more posts on Phoenix following this one. One on my many personal thoughts and opinions of the conference, then one for just the general Arizona vacation, so those will be coming very soon.
Until then, cheers!
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