Attitude · Diet Compliance · Inspiration/motivation · Living with PKU · Moms · Promotion/Awareness · Science

NPKUA Conference

The conference is over. I’m in my hotel room after the last day of maternal PKU mentor training. My baby is asleep. It is a beautiful night in the beautiful city of Indianapolis. My heart is just filled with gratitude for being able to have this experience. 

a little walk outside before bed
I loved the architecture downtown
lots of neat war memorials

First of all, a huge shout out goes to my sister-in-law, Stephanie, who watched my baby for hours at a time, four days in a row, and has a two-year old and a baby of her own. She’s amazing! Thank you Steph! I could not have done this without you.

This conference was absolutely wonderful. I think one of the best things for me was getting to know the National PKU Alliance better. What an incredible organization, from the president, Amy, and the executive director, Christine, to the local families who head things up in their own regions, to the many staff members, and speakers at this conference that made it so great. These are talented and passionate individuals and families working hard to create a better life for those affected by PKU.

I didn’t come with any adults, so it was fun to sit by different people at each meal (awesome low- and high- protein food!) and in each class. It was great to hear the latest research, learn great coping strategies and get inspired for thoughts I can share in my blog.

yay for science

Speaking of my blog, I had fun handing out these little fliers to people I met who might be interested. I met some awesome families doing a great job raising their PKU kids.


So look forward to posts about the new PKU registry, empowering your PKU child, and being your own health advocate.

One thing that really stuck out to me at this conference is that everyone’s PKU is different. People’s genotype, Phe tolerance, diet journey, and the overall impact on life can vary greatly, but what we share by having PKU brings us together into a wonderful community of support, creativity and a drive for a better future.

Thank you NPKUA for a wonderful conference and all the great work you do!

#PKUstrong

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2 thoughts on “NPKUA Conference

  1. Elisa, it was wonderful meeting you and your sweet baby over the weekend. I took your little slip of paper and now following you. You are an inspiration to many, including my daughter Ellis. Thanks for sharing your thoughts and dreams on here and being a positive voice!
    Much Love
    Heather Bomar and Family

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