The Henrys’ Journey With NR4A2

It's nice to give back and help people out and let them know that there is hope for the future.

Joe Henry, father of Franklin, his 27-year-old son with NR4A2-related syndrome

What is your family like?

Our family is more compassionate because of this experience that we went through.

What do you do for fun?

We find the little things in life fun like watching football, walking the dog, and spending time together.

Tell us about the biggest hardship you face.

I would say that our hardships have become less and less over the years. It’s nice to give back and help people out and let them know that there is hope for the future.

Woman sitting at desk with person

What motivates you to participate in research? 

Letting researchers know about our group because this gene is linked to so many things, but not all researchers are familiar with NR4A2-related syndrome.

How do you feel you are helping Simons Searchlight learn more about rare genetic changes? 

I would say by hosting their Facebook page it puts more people together, whether or not they have participated in Simon Searchlight. It’s very helpful to have a place where you can share ideas and thoughts about this syndrome.

What is one question you wish researchers could answer about this genetic change?

Why there is no rhyme or reason of why if someone has a missense variant or a loss of function variant, the outcome can be totally different.

What have you learned about your or your child’s genetic condition from other families?

That there are so many similarities and that there are also so many differences.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

Do not fret. Take care of your whole family and take care of yourself and things will be better if you do that.

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