HLH Heroes Foundation

HLH Heroes Foundation "NO ONE FIGHTS ALONE"

Mission: HLH Heroes Foundation provides support to individuals and families impacted by HLH (Hemophagocytic Lymphohistiocytosis).

Created by family members and caregivers of HLH warriors & angels to create a community of support.

💙 It's Warrior Wednesday 💙Today we honor Warrior, Joe 🌠On January 3rd, my dad had fallen and was in the ICU with complic...
08/26/2026

💙 It's Warrior Wednesday 💙
Today we honor Warrior, Joe 🌠

On January 3rd, my dad had fallen and was in the ICU with complications and severe pneumonia in his chest. This was extremely sudden and very weird, considering my father was scheduled for back surgery on the 7th, and no doctors saw anything wrong with him in his blood work and X-rays.

Fast forward to the 6th, when they had put my dad on a ventilator in a medically induced coma. We all tried to remain hopeful as the hospital told us we were running out of options, and every day, a new issue would arise with my dad's health. If something even slightly started to improve, another organ would start to decline.

We were just about to leave the hospital on the 7th when we were told they had a breakthrough on what was wrong with my father. They diagnosed him with secondary HLH.

We were told the only way to help my dad was chemotherapy. We all knew my father's body wasn't going to be strong enough to handle it, but we were left with no other treatment options, so we proceeded. The doctors were hopeful and told us we should see improvements by Friday.

Well, a few hours later, around 10:30 p.m. on the 7th, we got the phone call that we needed to come and say our goodbyes.

We all knew my dad did not wish to be kept alive on a machine and that he was suffering at this point. So, we made the decision to shut the machine down and let him pass as peacefully as possible.

At 1:13 a.m. on January 8th, my dad passed away.

This disease took my dad so quickly and suddenly. We had no idea what it even was. He left behind a wife, two daughters, and two grandchildren that he loved more than anything.

He was supposed to retire that year. He passed right before his 56th birthday.

Our 501c3 foundation is putting together its fifth Trivia Night! 🎉 We are looking for silent auction donations as well a...
08/24/2026

Our 501c3 foundation is putting together its fifth Trivia Night! 🎉

We are looking for silent auction donations as well as looking for a few sponsors! Please contact us if you are interested in donating or becoming a sponsor at [email protected] or comment on here and we will follow up with you!

If you want to come join the fun and bid on some silent auction items check out this link to register:
https://www.zeffy.com/en-US/ticketing/hlh-heroes-5th-annual-trivia-night
(please note there is an OPTIONAL fee for the zeffy platform that gets added on if you purchase. You can change this so there is no additional fee.)

For those that do not know: Hemophagocytic lymphohistiocytosis (HLH) is a rare disease that usually occurs in infants and young children. The disease causes the bodies immune system to damage it's own tissue and organs. All funds raised from this event will go towards individuals and families who have received an HLH diagnosis.

Thanks for your support! 💙

Do you use Minted for your printing needs? Check out this code for 20% off!From graduations to weddings to new babies to...
08/22/2026

Do you use Minted for your printing needs? Check out this code for 20% off!

From graduations to weddings to new babies to the holidays, you can now help support HLH Heroes Foundation while shopping at Minted for every occasion! You save 20% and Minted will donate 10% of all purchases made through our unique code back to HLH Heroes!

We are excited for this partnership! Use code: FUNDRAISEHLHPTSA

Fact Friday! Questions for your Healthcare team.
08/21/2026

Fact Friday! Questions for your Healthcare team.

We are getting ready for Histiocytosis Awareness Month and we need your help!HLH is rare and many people haven't heard a...
08/20/2026

We are getting ready for Histiocytosis Awareness Month and we need your help!

HLH is rare and many people haven't heard about... and THAT is what this September is all about. We are sending out "Go BLUE" kits to help spread awareness. The kit will include:
(1) No One Fights Alone window cling
(2) Blue Awareness Ribbon stickers
(1) Blue Awareness Ribbon
(5) HLH Conversation Info Cards

We need your help starting conversations for Histiocytosis Awareness month so more people find out what HLH is! Give one HLH Conversation Info card to your teacher, your doctor, a barista, a server, or someone you meet at a networking event! As you hand these out, tag us on social media ( ) to tell us how shared your cards!

Please complete the form below if you would like a kit. Please note we can only mail to addresses in the United States at this time.

If you are able to, please consider a donation of $5-10 to help cover the cost of making and shipping these kits. You can donate here: https://www.zeffy.com/en-US/donation-form/hlh-heroes-september-histiocytosis-awareness or can Venmo -heroes

Thank you for helping to ensure- No One Fights Alone!

If you have any questions, please reach out to: [email protected]



Form to complete is here!
https://forms.gle/p7Y2HY11hGQcPh9o9

THANK YOU to American Family Insurance- Mike Scott Agency for being a PLATINUM Sponsor this year for HLH Heroes 5th Annu...
08/15/2026

THANK YOU to American Family Insurance- Mike Scott Agency for being a PLATINUM Sponsor this year for HLH Heroes 5th Annual Trivia Night!

This one is special as the Scott family was personally impacted by HLH and they help us to pay it forward to other HLH families. We are extremely grateful to partner with this agency.

If you haven't registered for trivia yet, it's on Nov. 14th! Early-bird registration is going on right now, but the tables are going fast! Check out this link to buy your table of 8: https://www.zeffy.com/en-US/ticketing/hlh-heroes-5th-annual-trivia-night

Come join us and help make an impact for the HLH Community!

Do you know anyone who wants to be a Round Sponsor for our HLH Heroes 5th Annual Trivia Night? It's $200 to become a rou...
08/13/2026

Do you know anyone who wants to be a Round Sponsor for our HLH Heroes 5th Annual Trivia Night?

It's $200 to become a round sponsor and your business card/ad is placed on one round answer sheet for our trivia night. The business card or logo will also be shared on the slideshow and on event page!

Share this and contact [email protected] if interested!

The HLH Heroes Foundation’s Caring Companions program is about connecting newly diagnosed families with others who have ...
08/13/2026

The HLH Heroes Foundation’s Caring Companions program is about connecting newly diagnosed families with others who have already walked a similar path. If you or a family member has faced HLH, whether primary or secondary, and are passionate about supporting other families facing an HLH diagnosis, please consider becoming a Caring Companion volunteer and a member of our trusted network of support.
If interested, please complete this form, and we will reach out to you with more information.
https://wkf.ms/42Erf9r

A HUGE Thank You to World Wide Technology for being a Platinum Sponsor at our HLH Heroes 5th Annual Trivia Night this ye...
08/13/2026

A HUGE Thank You to World Wide Technology for being a Platinum Sponsor at our HLH Heroes 5th Annual Trivia Night this year.

This sponsorship truly helps make the event a huge success and we appreciate the support to help us fulfill our vision of: No One Fights Alone!

We are LOVING watching people get their blankets. These are so special, meaningful, and SOFT! A great way to snuggle in ...
08/12/2026

We are LOVING watching people get their blankets. These are so special, meaningful, and SOFT!

A great way to snuggle in and get ready for fall.

Thank you to everyone who has ordered one so far. This helps us to stretch our reach even further to help more HLH families.

Address

5051 Peyton Place Court
Sappington, MO
63128

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