ONCE UPON A GENE - EPISODE 179 - Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados

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Matt and Maria Granados are the parents of 4-year-old Natalie, who suffers from a rare form of muscular dystrophy called PYROXD-1. They are the founders of the Take Part Foundation which helps to fund research for rare pediatric conditions.

EPISODE HIGHLIGHTS

Can you tell us a little bit about yourselves and your family?

We are a family of four, almost five, with one on the way. Natalie is our oldest daughter and she has a very rare form of muscular dystrophy that is labeled by the gene called PYROXD-1. She has a little brother named Ziggy who just turned four. And I am pregnant with the next little brother. Matt and I have been married for almost eight years. We are entrepreneurs at heart, so we have owned our own businesses for quite some time. We started a foundation for our daughter when we found there wasn't much known about her condition, and we wanted to know more and do all we could.

Can you tell us a little bit about PYROXD-1?

To describe Natalie's condition, gravity is her worst enemy. She has complete movement, but can't stand, can't sit herself up and can't roll herself over. Nat's condition as a whole is a genetic mutation that's causing her muscles not to act the way they should. Very little is known about the PYROXD-1 gene, so much of the research our foundation funds is for Nat's gene. We're also focused on providing more genetic testing for people who can't afford it.

What was the initial funding focus and the first step you took that inspired the foundation?

When we were given the dollar amount that they needed, we knew we could help raise the money. When you're a parent of a child with a rare condition, you're hyper-focused on just their condition, so we never considered so many other people affected by rare disorders. When we realized that rare wasn't all that rare, we started thinking about how we could help more people. When we started Take Part, we also started Warrior Page to help parents tell their story no matter their technical background. We can't fund every single rare condition, but Warrior Pages can help every parent and it's completely free on our website.

What do families do and how do they take advantage of Take Part as a resource?

Our mission is to take existing medical research that's in infant stages, aimed at rare pediatric diseases, and we help fund it until it gets to the point where other major funding organizations can get involved. A huge part of what we do is to provide resources for families and parents to tell their story. We came up with these three ways that people can take part. If you're listening to this and you have a kid with a rare condition, go to our website and create a Warrior Page. If you don't have a rare condition, but know someone who does, share this resource with that family.

LINKS & RESOURCES MENTIONED

Take Part Foundation

Warrior Page

Life Date Guide (use code ONCEUPONAGENE)

Life Pulse Planner (use code WARRIORFAM)*

*Email Matt@LifePulseinc.com with the subject ONCE UPON A GENE for planner tips

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