Who We Are
The HLH Heroes Foundation is a 501(c)3 non-profit organization formed in 2021 by a group of HLH caregivers who wanted to honor their warriors by building a community of support.
What We Do
Being diagnosed with a rare disease is hard. HLH treatment is hard. Yet, because of its rarity, there are not many organizations out there that offer support to those specifically with an HLH diagnosis. We wanted to fill that gap. Our mission is to support individuals and families impacted by an HLH diagnosis. Our support initiatives include:
Hospital care packages
Opportunity to connect with other HLH families
Coming soon - Sibling Support Program
Why It Matters
HLH is considered a rare disease. Because of its rarity, it lacks the attention, study, and funding that is needed for physicians to fully understand it, let alone know how to treat it. Due to the inflammatory nature of HLH, caused by the cytokine storm that forms as a result of an overreacting immune system, HLH is life-threatening. Without treatment, it is often fatal. With treatment, the survival rate is still fairly low, and the treatment journey is long, difficult, and very lonely. It affects the entire family. Many patients or caregivers are forced to give up their jobs to endure harsh chemotherapy treatments, long and scary hospital stays as they undergo a bone marrow transplant (the only known cure for primary HLH), and countless doctor's appointments for long-term monitoring. These patients and families need to know that they are not alone. They need their voice to be heard, and they need support to make it through the journey. HLH Heroes Foundation aims to not only raise awareness for this rare disease but also to be the support system needed when these individuals and families have nowhere to turn. Your support can help our organization provide emotional, financial, and educational support to a community that really needs it.
"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles."
Meet Our Warriors
Age and Date of Diagnosis: 6 Months Diagnosed 6/2020
Diagnosis: Primary HLH
Location of Treatment: St Louis Children’s Hospital
Child’s Interests: Myles loved music and holding your hand
Date of Diagnosis and Age at Diagnosis: October 2012 in-utero now (8 yrs old)
Diagnosis: (Primary/Secondary): Primary
Location of Treatment: Cardinal Glennon Children’s Hospital in St. Louis
Child’s Interests: He loves all things Minecraft, Fortnite, Legos, Marvel, and playing volleyball
Age and Date of Diagnosis: 5 yrs old at diagnosis on 12/24/11
Diagnosis: (Primary/Secondary) Primary
Location of Treatment: Cardinal Glennon Children’s Hospital then Cincinnati Children’s
Child’s Interests: Phineas and Ferb, Legos, Ninjago, Cars, airplanes