How to Make CHD Awareness Week Every Week by Supporting CHD Organizations

Updated: Sep 5


Here Are Some of the Coolest CHD Organizations & Simple Ways How You Can Spread CHD Awareness


There are so many great organizations that are truly carrying the torch for CHD research and families. Many of you know my 50 |50 CHD Promise for the Tori Joy Geiger blog where 50% of my blogging commissions are pledged to chd organizations. I wanted to highlight some of the organizations that Tori Joy supports and also provide ways for you guys to get involved with chd awareness beyond just giving money. I will outline a little background on each organization in addition to ways that you specifically can play an important role in their mission. Let's make chd awareness week every week using these simple and easy ways!


CHD Awareness Organization #1 - Tommy Tough Foundation

I found the Tommy Tough Foundation through Instagram while I was in college. Before I found Tommy Tough, I actually had been following one of its founders, Jennie Frey and from her page, I found the incredible organization her family started. The Frey's are such a sweet, fun family, and their youngest son, Tommy, has chd. When he was only 10 days old, Tommy went into heart failure, and at just 12-days old he had his first open-heart surgery and another at 8 months old to receive a mechanical valve. It was not an easy road for the Frey family to say the least.



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Even though his surgery was a success, he ended up getting an infection in his intestines leading to SIX abdominal surgeries! Jeez, he's a fighter! Because of the stress on Tommy's little body, his heart kept going into Supraventricular Tachycardia (SVT), and the only way to calm his heart was to put him in a medically induced coma. His coma lastest for 4 days and following the coma, severe drug withdrawals set in, and Tommy had to be intubated for 21 days. Today Tommy is doing well, but the Freys anticipate more surgeries and procedures in his future. The Tommy Tough Foundation was started as a way to provide hope and support for families and children with chd just like Tommy. You can visit the Tommy Tough Foundation's Facebook page to donate directly or purchase one of their cute hats featured in the picture above. Proceeds go towards CHD Organizations!


CHD Awareness Organization #2 -The Children's Heart Foundation

The Children's Heart Foundation was one of the first organizations I came into contact with when I began researching chd organizations and how to get involved. Their main mission is to "advance the diagnosis, treatment, and prevention of congenital heart defects by funding the most promising research." It is so cool to see the millions they have raised for chd research and scientific collaborations that are improving survival rates and the quality of life for CHDers like myself. I know in just my 23 years, science, technology, and surgical methods have changed so much! Most states have a local chapter, and mine is based out of Portland, Oregon. These local chapters provide so many opportunities and events throughout the year so it's easy to get involved! I personally have participated in the Congenital Heart Walk in the previous years, and it has been SO much fun! I have listed some other fun ways you can get involved and support CHF. You can get started TODAY!

  1. Walk in your local Congenital Heart Walk! You can Register Today!

  2. Name the Children's Heart Foundation as Your Charity Choice on Amazon Smile.

  3. Host a Fundraiser on Facebook!

  4. Create Custom Ink T-Shirts for a fundraiser & designate the CHF as the Beneficiary

  5. Use Change My Heart to collect spare change at your school, workplace, stores, churches, and restaurants

  6. Purchase Coffee from Heart2Heart Coffee & name CHF as the supported organization.

  7. Designate CHF as your organization at Food for Less or your local Fred Meyer. A portion of the proceeds of your purchases then goes to your selected organization. Personally, I use Fred Meyer's Community Rewards program, and the proceeds are designated to the Portland Congenital Heart Walk.

  8. Volunteer at CHF by working a Congenital Heart Walk or help find sponsors for the event.

  9. Donate Directly to CHF on their Website.



CHD Awareness Organization #3 -Conquering CHD

I recently came into contact with Conquering CHD on social media as well, and I loved the message and awareness they were spreading for not only children with chd but also adults! Originally founded as the Pediatric Heart Association in 2013, they have since then become a voice for chd patients and families from diagnosis to adulthood! That is SO needed friends! They exist to empower patients and their families throughout their lifespan, not just at diagnosis or in the pediatric years. Conquering CHD provides education to the community and it furthers research. They are involved with patients, family members, lawmakers, medical providers, scientists, and the media to raise awareness and support those affected by CHD. How stinking cool!? Here are some easy ways to get involved and support Conquering CHD.

  1. Join the Conquering CHD Newsletter to get involved with upcoming events and campaigns.

  2. Follow Conquering CHD on social media and share their CHD Aware posts to help educate your friends and family.

  3. [For CHD families] Connect with other chd families in CHD Facebook Groups.

  4. Share your story or encourage your chd warrior or family to share their heart story on Conquering CHD.

  5. Attend Advocacy Conferences or learn how to get in touch with your local lawmakers to affect policies that impact CHD funding and health outcomes.

  6. Shop for some CHD Swag!

  7. Do you know someone with CHD? Whether they are currently in the hospital or a teenager, you can request a care package to be sent to them! How cool is that!

CHD Awareness Organization #4 -Ethan Lindberg Foundation

I found the Ethan Lindberg Foundation when I was looking for some cute heart warrior gear that supported chd organizations, and I fell in love with their foundation. The organization was founded by Jessica and Erik Lindberg in honor of their son Ethan Markus after his 7 year battle with chd. The Lindbergs are dedicated to spreading Ethan's joy and love to the many families affected by chd as well. They are determined to build a better and stronger future for CHD families from the best care to medical communication between doctors and parents. Using practical support and care of the whole child, the Ethan Lindberg is seriously making an incredible impact on chd warriors, research, and families! And there are some easy ways to get involved!

  1. Donate Directly on the Ethan Lindberg Foundation's website.

  2. Join their running program! Form a fundraiser team and join a run from anywhere! You can also bike or swim! You can also join my team The Tori Joy Tribe as I train for my half-marathon this year! 🏃🏻‍♀️

  3. Shop Four Hearts Shop's cute sweatshirts, tees, and accessories that showcase powerful words and encouragement to all who wear and see the merchandise. 100% of the proceeds go to the Ethan Lindberg Foundation! ❤️ I'm wearing one of my favorite hoodies from Four Hearts Shop below!

  4. Listen to The Heart Strong Podcast and share it with your friends! Jessica Lindberg has a fabulous podcast where she interviews guests to talk about resilience through difficult traumas and your chance to make an impact in this world. Definitely check it out!



It is such a blessing to find incredible chd organizations like the ones I mentioned above that are on the front lines of chd awareness and support. I love seeing fellow chd families like the Freys and the Lindbergs that are thinking BIGGER! They are using their powerful stories to make an impact on families just like them. That's what's so cool to me. We can use OUR stories. The pain. The victories. The hope. For good and to spread love to others. Go out and get involved with one of these organizations. Every little bit helps, and you have the power to make an impact!

PS: Do you have chd organizations that you support that aren't featured here? Drop a comment below or email me your favorite organizations! I'd love to explore them and possibly feature them here!

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