Childhood naturally comes with some growing pains for both parents and kiddos—but adding a rare disease to the mix can make these challenges seem insurmountable. Millions of people suffer from rare diseases, and little about these conditions is known, making treatment virtually nonexistent. That’s what Maria Granados and her husband, Matt, discovered when their daughter received one such diagnosis. Determined to help kids and families thrive, they created the Take Part Foundation.

What is the Take Part Foundation’s mission?
We help kids with rare diseases thrive by funding research. These are overlooked issues. There are not many studies into these diseases, and those that exist are often underfunded. The Take Part Foundation also helps families pay for genetic testing because so many are denied these tests by insurance.

Where did the idea for the nonprofit come from?
My daughter, Natalie, suffers from a genetic disorder called PYROXD1. After she was born, we were new parents trying to figure out if there was a problem, and initially, doctors told us not to worry. It became clear that something was wrong, however, around the time she turned 1. We visited countless medical professionals and finally got an answer thanks to genetic testing. PYROXD1 is an incredibly rare disease—Natalie is the 17th person in the world to receive the diagnosis. We started doing what any parent would do and researched it online. We found a doctor in Australia that was studying PYROXD1, but they didn’t have money to really continue. We wanted to help fund that research.

Why are rare diseases an important issue?
Rare diseases are more common than you think. Around 30 million Americans have been diagnosed with a rare disease because there are so many—around 7,000 are known. Around 95% of these diseases don’t have an approved treatment. For children, 30% of those diagnosed won’t live to see their fifth birthday. Research into rare diseases is needed to develop ways to treat these conditions, but those studies are often in a kind of limbo because there just isn’t the money to support it.

What types of research has the foundation been able to fund?
The Take Part Foundation has raised more than $500,000 to fund crucial research and provide genetic testing. We’ve been able to donate more than $100,000 toward PYROXD1 research initiatives in both Australia and Texas. We have a new project to support a study on Gould Syndrome at the University of San Francisco. Locally, we’ve been able to donate more than $120,000 to help families receive genetic testing. There is currently a waitlist to access those funds, so it’s still a critical need. We do other work in the community, including with families of veterans and donating to other rare disease organizations.

Do you offer support for families in other ways?
Along with helping pay for genetic testing, we provide families with Warrior profiles. This is an online resource for them to create a page about their child. It not only allows them to share their story and raise awareness, but it can be an invaluable resource. It lets teachers, friends and even medical professionals know what is going on. One time, we were on the East Coast, and Natalie ended up in the I.C.U. We were flustered, but because we had a Warrior profile, we could share it with the doctor. This was before she received a diagnosis, and having the page helped the doctors care for her in an emergency situation.

How can people support the Take Part Foundation?
There are some fun ways to get involved. In March, we are having a Skate Under the Stars event. It’s open to all families, and accommodations will be made for individuals with walking devices or wheelchairs. It’s an exciting way to come together to raise awareness and celebrate. Along with ice skating, there will be hot chocolate and face painting. Our Wine, Women and Shoes Gala is in May. It includes a fashion show and auction. It’s a fun and lively event. In the fall, we host a Donut Run. What better way to run or walk a 5K than with donuts? There’s a coffee bar for the grownups, and face painting for kids. It’s a great way for the Take Part Foundation to share our work. We can always use donations, and we hope people will share our website, especially with families dealing with rare diseases so they can create a Warrior profile.

To learn more, visit take-part.org.

Photos courtesy of the Take Part Foundation