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02/08/10

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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

bullet Facts about Langerhans Cell Histiocytosis
bulletA good introduction, and a link to the Histiocytosis Association of America website. Lots of great info.
bulletSydney Salem Golding Fund Blog
bulletOne amazing person I'm glad we have on the Histio Team... Mike follows all things histio and posts them here on his blog.
bullet Lab Tests Online
bulletExplains the terms from all those blood tests your kids are getting.
bulletPediatric Oncology Resource Center
bulletWhile 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.
bullet PubMed
bulletFrom the National Library of Medicine, you can search on technical publications regarding LCH.
bullet Corporate Angel Network
bulletWill 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.
bullet Houston Ground Angels
bulletA 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.
bulletDr. Kenneth McClain
bulletTexas Children's Cancer Center and Hematology, and one of the few doctors doing research on LCH.
bullet Dr. Kenneth McClain's Histiocytosis Lab at TCH/Baylor
bulletA profile of the lab Dr. McClain runs at Texas Children's Hospital/Baylor. The most cutting edge work on histiocytosis is done right here.
bullet The Big Meeting
bulletSummaries, 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.
bulletRegional Information Meeting PowerPoint Presentation
bulletDr. 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.

Histiocytosis in the press

Every now and then Histiocytosis does show up in the press. Here are a few stories.

bullet Seneca Valley community steps up
bullet Benefit For Frankston Boy Raises $4,000
bullet Perryville boy returns from hospital stay
bullet Sick Boy Gets His Field of Dreams
bullet Port Hueneme child fighting rare disorder
bullet Uphill Climb
bullet Brother in Arms
bullet Rare Disease Has Community Rallying Around Sioux City Baby
bullet Gary, 17, dies from rare form of cancer
bullet Nathan Crosby Day In Barndall
bullet FOX6 Family Health: Histiocytosis
bullet LCH Patient Nominee For 'Extreme Home Makeover'
bullet A professor's hardest lesson
bullet East Texas Family Nominated For Extreme Makeover: Home Edition
bullet Rare Disease has 3-Year-Old Fighting for Life
bullet Local boy granted his Hawaiian wish
bullet Legislator's wife fights rare disease
bullet There is still “GOOD” in the world
bullet Rare Disease Gets Special Attention from Local Doctor (includes audio interview with Dr. McClain)
bullet Cyclists Making "Histio" History

 

Other Families Battling Histiocytosis

Want your website added? Just email me. Also, please add Logan's link to your website.

bulletAlex's Story - LCH in Minneapolis
bullet Tucker Anderson - Diagnosed with both LCH & HLH
bullet Alexi Ascencio, Geneva, Illinois
bullet Elias Asmar - LCH in Cleveland, OH
bullet Weston Beving - LCH in Nashville, TN
bullet Zoe Kay Bittinger - LCH in New Orleans, LA
bullet Teresa Michelle Bogstad - LCH in Boston
bullet Ian Brown - LCH in Washington, DC
bulletRiley Connolly - LCH in AZ
bullet Maggie Kate Cummings - LCH in Mississippi
bullet Beau Donner - LCH in VA
bullet Brian - LCH in VA
bullet Austin Giacomo - LCH in Oklahoma City, OK
bullet Hannah's Story - LCH in IL
bullet Hanoch's Story - LCH in Israel
bullet Derek Henry - LCH in TX
bullet Zachary Hunter - LCH in Middle Grove, NY
bullet Nicholas Johnson - LCH in Minneapolis
bullet Sawyer Johnston - LCH in VA
bullet Isabella's website - LCH in Minneapolis
bullet Ivy's website - LCH in Oakland, CA
bullet Christian's Story - LCH in OH
bullet Connor Millard - HLH
bullet Erin Newton - LCH in AL
bullet Olivia St. Germain - LCH in IL
bullet Jax's Story - LCH in Nashville, TN
bullet Max Pouget - LCH in MI
bulletEmily Sellers - LCH in AL
bullet Jack Thompson - LCH in IL
bullet 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.

bullet Nathan Cosby 2-27-07
bullet Our little angel Andrew
bullet Baby Cale Slideshow
bullet BIG FIX trailer
bullet Sydney Preview

Learn about LCH with our NEW video series presented by Dr. Ken McClain of Texas Children's Cancer Center!

bullet LCH 101, Part 1 of 7
bullet Introduction & clinical challenge
bulletSymptoms (clinical presentation)
bulletWhat is a histiocyte?
bulletWhere do histiocytes come from?
bullet LCH 101, Part 2 of 7
bulletHistorical perspective
bulletStaining cells
bulletBasic LCH cell biology
bullet LCH 101, Part 3 of 7
bulletWhat are LCH lesions made of?
bulletGrowth factors in LCH
bulletCancer or not?
bulletImaging LCH and PET scans
bullet LCH 101, Part 4 of 7
bulletPhotos of symptoms (Skin, oral, Gastro-intestinal)
bulletClinical trials explained
bulletThe LCH III protocol
bullet LCH 101, Part 5 of 7
bulletAdditional treatment options
bulletWhat if 1st treatment fails?
bulletOther Histiocyte Society studies
bulletSurvival rates and reactivations
bullet LCH 101, Part 6 of 7
bullet Late Effects of LCH
bulletCentral Nervous System (CNS) concerns
bulletThe future
bullet LCH 101, Part 7 of 7
bulletCurrent 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
 

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.

bullet An Overview of Histiocytic Disorders, Part 1 of 4
bullet An Overview of Histiocytic Disorders, Part 2 of 4
bullet An Overview of Histiocytic Disorders, Part 3 of 4
bullet An Overview of Histiocytic Disorders, Part 4 of 4

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.

bullet LCH in Newborns, Part 1 of 2
bullet LCH in Newborns, Part 2 of 2

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.

bullet LCH Bone, Part 1 of 3
bullet LCH Bone, Part 2 of 3
bullet LCH Bone, Part 3 of 3

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.

bullet Endocrine Problems in LCH, Part 1 of 3
bullet Endocrine Problems in LCH, Part 2 of 3
bullet Endocrine Problems in LCH, Part 3 of 3

 

 

 

 

 

 

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This site was last updated 01/26/10