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Useful links for more information regarding Histiocytosis, and other
families fighting the disease.
I'll be honest, as you read through this info, you'll likely feel
frustrated, confused, scared, and even terrified. This disease is not well
understood. Most often it strikes our precious children. Some of the
children's stories are very emotional. I was tempted to only include links
to the kids that are doing well, or those that are in remission. That would
give a false indication of "everything will be OK."
If you'd like to make a difference, please check out the
How To Help page. There are many ways to help
and some are free!
More Info
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Facts about Langerhans Cell Histiocytosis
 | A good introduction, and a link to the
Histiocytosis Association of America website. Lots of great info. |
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| Sydney
Salem Golding Fund Blog
| One amazing person I'm glad we have on the Histio
Team... Mike follows all things histio and posts them here on his blog. |
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Lab
Tests Online
| Explains the terms from all those blood tests
your kids are getting. |
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| Pediatric
Oncology Resource Center
| While they don't officially classify
histiocytosis as a "cancer," patients are often treated with the
same drugs and face similar side-effects, late effects, etc. This
site is a great resource. |
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PubMed
| From the National Library of Medicine, you can
search on technical publications regarding LCH. |
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Corporate Angel Network
| Will arrange free air transportation for cancer
patients traveling to treatment using the empty seats on corporate
jets. While we've never asked, I would bet that they would consider
Histiocytosis patients as well. When Logan's immune system was so
suppressed, we were very apprehensive flying commercial for his
second opinion. This would have been a great option had we known
about it. |
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Houston Ground Angels
| A network of volunteers who donate their
time to help provide free healthcare access to patients in
need of transportation to their required healthcare facilities
in Houston, TX. |
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| Dr. Kenneth McClain
| Texas Children's Cancer Center and Hematology,
and one of the few doctors doing research on LCH. |
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Dr. Kenneth McClain's Histiocytosis Lab at TCH/Baylor
| A profile of the lab Dr. McClain runs at Texas
Children's Hospital/Baylor. The most cutting edge work on
histiocytosis is done right here. |
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The Big Meeting
| Summaries, slide presentations, and photos from
this national conference on histiocytic disorders held Sunday, July
9th, 2006 at Rainbow Babies and Children's Hospital in Cleveland,
OH. Our heartfelt appreciation goes to Michael Golding for
organizing and underwriting this conference. |
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| Regional Information Meeting
PowerPoint Presentation
| Dr. Ken McClain made this PowerPoint presentation
at the Regional Information Meeting in Palo Alto, CA on 10/8/05.
Download it here, and select "SAVE FILE." You will need to have
PowerPoint to view this presentation. |
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Histiocytosis in the press
Every now and then Histiocytosis does show up in the press. Here are
a few stories.
Other Families Battling Histiocytosis
Want your website added? Just
email me. Also, please add Logan's link to your website.
| Alex's
Story - LCH in Minneapolis |
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Tucker
Anderson - Diagnosed with both LCH & HLH |
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Alexi Ascencio,
Geneva, Illinois |
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Elias Asmar - LCH in Cleveland, OH |
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Weston Beving - LCH in Nashville, TN |
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Zoe
Kay Bittinger - LCH in New Orleans, LA |
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Teresa Michelle Bogstad - LCH in Boston |
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Ian Brown - LCH in Washington, DC |
| Riley
Connolly - LCH in AZ |
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Maggie Kate Cummings - LCH in Mississippi |
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Beau Donner - LCH in VA |
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Brian - LCH in VA |
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Austin Giacomo - LCH in Oklahoma City, OK |
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Hannah's Story - LCH in IL |
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Hanoch's Story - LCH in Israel |
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Derek Henry - LCH in TX |
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Zachary Hunter - LCH in Middle Grove, NY |
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Nicholas Johnson - LCH in Minneapolis |
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Sawyer Johnston - LCH in VA |
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Isabella's website - LCH in Minneapolis |
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Ivy's website - LCH in Oakland, CA |
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Christian's Story - LCH in OH |
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Connor Millard - HLH |
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Erin Newton - LCH in AL |
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Olivia St. Germain - LCH in IL |
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Jax's Story - LCH in Nashville, TN |
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Max Pouget - LCH in MI |
| Emily
Sellers - LCH in AL |
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Jack Thompson - LCH in IL |
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Brendan Torrey - LCH in NY |
Histiocytosis on YouTube
More and more histiocytosis stories are being told on YouTube, the
free video service. This is a great way to raise awareness for our fight
against this disease. I urge you to add your story, too. You can
search for all video clips relating to histiocytosis by clicking here.
These are some of our favorites at the time this page was last updated.
Learn about LCH with our NEW video series presented by Dr. Ken
McClain of Texas Children's Cancer Center!
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LCH 101, Part 1 of 7
| Introduction & clinical challenge |
| Symptoms (clinical presentation) |
| What is a histiocyte? |
| Where do histiocytes come from? |
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LCH 101, Part
2 of 7
| Historical perspective |
| Staining cells |
| Basic LCH cell biology |
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LCH 101, Part 3 of 7
| What are LCH lesions made of? |
| Growth factors in LCH |
| Cancer or not? |
| Imaging LCH and PET scans |
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LCH 101, Part 4 of 7
| Photos of symptoms (Skin, oral, Gastro-intestinal) |
| Clinical trials explained |
| The LCH III protocol |
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LCH 101, Part 5 of 7
| Additional treatment options |
| What if 1st treatment fails? |
| Other Histiocyte Society studies |
| Survival rates and reactivations |
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LCH 101, Part 6 of 7
| Late Effects of LCH |
| Central Nervous System (CNS) concerns |
| The future |
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LCH 101, Part 7 of 7
| Current LCH Research being done by
Kenneth McClain M.D. Ph.D.
Carl Allen M.D. Ph.D.
Liunan Li M.D.
at
Texas Children’s Cancer Center
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Dr.
R. Maarten Egeler of Leiden University Medical Center in The Netherlands
presents "An Overview of Histiocytic Disorders" at the National
Conference on Histiocytic Disorders presented in Orlando, August 2007.
Learn about LCH in Newborns with our NEW video series presented by Dr.
Sheila Weitzman of The Hospital for Sick Children in Toronto! This is
the first of many videos soon to be released from the National
Conference on Histiocytic Disorders presented in Orlando, August 2007.
Dr.
Sheila Weitzman of The Hospital for Sick Children in Toronto presents
"LCH - Bone," which is the most common location for Langerhans Cell
Histiocytosis to strike. This video was filmed at the National
Conference on Histiocytic Disorders presented in Orlando, August 2007.
Dr.
Vasanta Nanduri of Watford General Hospital, Watford Hertfordshire, UK, presents
"Endocrine Problems in LCH." Some LCH patients will battle
endocrine issues for their entire life. What issues do they face, and
what should parents be on the look-out for? This video was filmed at the National
Conference on Histiocytic Disorders presented in Orlando, August 2007.
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