This past weekend we took a road trip to Norfolk, VA for the Niemann-Pick Family Support and Medical Conference. Families and medical professionals gathered from all over to learn the latest in research and spend time together.
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| Chip, me, Gigi (my mom), Kaitlyn and Cole |
We were really excited to meet some of the other NP families that we talk to on the phone and internet, like Wylder's Dad, Steven! Wylder also has NP Type A and is only a few months older than Kaitlyn. Wylder lives in Arizona and has a really cool website-
http://wylderjames.com.
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| Kaitlyn and Wylder's Dad |
Most of the families that attended the conference had a family member with Type B or C. Kaitlyn was the only child there with Type A. We thought that might be the case so we wanted to make a statement supporting Kaitlyn and making sure everyone there knew that Type A was represented. Check out the shirts that we had made!
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| Front of shirt |
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| Back of shirt |
We also got a chance to see and hear from the incredible Dr. Melissa Wasserstein from Mount Sinai Medical School and the National Niemann-Pick Center. She is an expert on Niemann-Pick Disease and the Director of Clinical Research at Mount Sinai for the research that is being done on NP. We went and saw her in NYC last year to be part of their natural progression study for NPA.
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| Chip, Kaitlyn and Dr. Wasserstein |
Kaitlyn also had support at the conference from her grandparents- Memere and Pepere, her cousin- Makayla and her grandmother- Gigi!
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| Memere and Cole |
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| Pepere and Cole |
We really enjoyed the conference, especially meeting with the other families. There was also a really fun banquet on the last evening of the conference. Here are some more pictures from our trip.
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| Hanging out during lunch |
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| Pepere, Makayla, Kaitlyn, Chip, Cole, Gigi and Steven during one of the sessions |
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| Hanging out in Gigi's room (aka the playroom) |
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| Mommy-Daughter time |
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| At the Waterside Mall next door to the hotel |
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| Comfy |
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| Gigi and Cole |
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| Gigi, Cole and Kaitlyn playing |
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| The research talk put Kaitlyn to sleep! |
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| It also put Cole to sleep! |
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| Memorial Candles |
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| Sarah Glassman |
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| Tehyez Minde |
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| A rare night out- at the banquet |
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| Makayla dancing |
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| Makayla and Pepere having a blast! |
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| Makayla and Me |
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