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Cooper's Pediatric LCH Research Fund


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Cooper was just two and a half years old when he was diagnosed with Langerhans Cell Histiocytosis (LCH) at a routine doctor’s appointment. He bravely endured a year of chemotherapy and currently has no signs of active disease today. While he appears to be thriving, there is no cure for his disease and little is understood about “late effects,” or complications that occur many years after treatment. The aim of Cooper’s Pediatric LCH Research Fund is to unlock the mystery of neurodegeneration so that LCH patients and families will no longer have to worry about this looming late effect.
2020
$50
Funds Raised in 2020
$31,581
Total Funds Raised
Since 2017

Today, Cooper is a healthy little boy who loves to play “food truck” and Legos with his sister. His energy is boundless and his curiosity is limitless. He loves music, dancing and making up silly words. From the outside, you would never know he was sick.

But when Cooper was just two and a half years old, he was diagnosed with pituitary stalk Langerhans Cell Histiocytosis (LCH). The diagnosis came a few months after his routine 30-month check-up when his pediatrician picked up on a passing reference that he had been peeing and drinking excess liquids in recent days. A battery of tests and a hospital stay resulted in a diagnosis of idiopathic central diabetes insipidus (DI). A few months later after further research and doctor’s visits an MRI lead us to an LCH diagnosis in the fall of 2016. We started treatment immediately in a bid to prevent any further complications from the cancerous growth.

Cooper bravely endured a year of chemotherapy, and today the LCH has no longer appears active. However, Cooper will always have DI. We hope this is the only permanent effect that Cooper has to deal with, but the threat of relapse and the loss of other pituitary hormones and/or neurodegeneration is a very real concern. Unfortunately, there is very little information on the neurological complications of LCH.

The two major obstacles to unlocking this mystery are that LCH is very rare and the study of late effects requires long-term patient follow-up. In the United States alone, only ~1200 new cases are reported each year (including adults). To overcome these obstacles, the LCH research community desperately needs resources to support long-term collaboration.

It is our hope that Cooper’s Pediatric LCH Research Fund can help:

  • Fuel the development and maintenance of durable investigator/patient networks that are required to study this small population over long periods of time
  • Support both translational and clinical research to discover and/or evaluate new treatments, diagnostics, or tools to prevent or treat the neurologic late effects of LCH

This research is critical to securing a healthy future for our boy and other children around the world like him. We hope you will join us in this important cause!

Cooper's Pediatric LCH Research Fund Highlights & Happenings

What is Langerhans Cell Histocytosis?

Dr. Carlos Rodriguez-Galindo is a St. Baldrick’s researcher at St. Jude Children’s Research Hospital. He explains what Langerhans cell histiocytosis is, how it’s diagnosed and treated, and how research is helping kids and adults with this disease. Check out the blog here.

What You Should Know

Childhood cancer affects thousands of kids and families around the world every year. This infographic shows a few realities you should know.
Our 2016 Donors

Your Support Means So Much

These friends and family members helped us raise funds for childhood cancer research in honor of Cooper! See the 2018-2020 list.

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Where does the money go?

Donations given to Cooper's Pediatric LCH Research Fund go directly to the St. Baldrick’s Foundation to fund lifesaving childhood cancer research around the world. The Foundation is guided by a Scientific Advisory Committee, comprised of leading experts in the childhood cancer community, to ensure that every dollar makes the greatest impact for kids with cancer.

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Who's involved

These people make us smile - they’re the doers and money-raisers on behalf of the Cooper's Pediatric LCH Research Fund. They’re shaving their heads, hosting events, starting fundraisers and more to make childhood cancer research possible.

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Get involved your own way:

Start your own St. Baldrick’s head-shaving event to raise money on behalf of our Hero Fund! You’ll be paired with a staff member who will walk you through every step of the process, and you’ll have fun knowing you’re doing a great thing for kids with cancer.

Register to shave your head and raise money for our Hero Fund at any St. Baldrick’s event happening around the world! Not finding an event near you? Register as a virtual shavee and shave your head anytime, anywhere.

Head-shaving not your thing? You can start a fundraiser to raise money for our Hero Fund with St. Baldrick’s in a way that interests you! Like biking? Bike a marathon. Like baking? Start a cookie baking fundraiser… You get the picture.

Need help? Email us at Funds@StBaldricks.org

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