NEW HLH WARRIOR IN NEED OF OUR PRAYERS

Please take a moment to support Caleb Tokarski and his family who was recently diagnosed with HLH. Caleb is undergoing chemo and battling bravely against liver and respiratory issues. 


http://www.caringbridge.org/visit/calebtokarski

Thank You!

INVITATION TO PARTICIPATE IN TCCC HYSTIOCYTOSIS RESEARCH PROGRAM

The Histio Heroes Research Fund is very proud and excited to announce an opportunity for histiocytosis patients to play a direct and important role in advancing the ground-breaking research that Dr. Ken McClain and Dr. Carl Allen are performing through the Histiocytosis Research Program at Texas Children's Cancer Center.


What does this research involve?

The TCCC Histiocytosis Research Program is dedicated to studying Histiocytic Diseases in order to identify the causes and discover cures. If you or your child are undergoing procedures (surgical biopsy, blood draw, lumbar puncture) for clinical purposes related to the diagnosis or treatment of histiocytosis, you are invited to participate in Histiocytosis Research Program.

This research requires tissue samples from patients with Histiocytic Diseases, including Langerhans Cell Histiocytosis (also called Eosinophilic Granuloma), Juvenile Xanthogranuloma, Rosai-Dorfman Disease, Erdheim-Chester Disease, Hemophagocytic Lymphohistiocytosis, and Malignant Histiocytosis. These tissue samples provide vital information that will assist the Histiocytosis Research Program team in understanding the basic causes of histiocytosis, which hopefully will lead to more effective treatments.

What is needed for this research?

Surgical biopsies. The current research is focusing on an effort to isolate pure populations of cells fresh or frozen biopsy specimens to discover which specific genes are causing Langerhans Cell Histiocytosis and related diseases.

Blood samples. White blood cells can be isolated and analyzed in order to determine which circulating cells and genes contribute to Histiocytic Diseases. The plasma fluid in blood can also be analyzed to determine which proteins are important in diagnosing and treating Histiocytic Diseases.

Cerebrospinal fluid. CSF is the fluid that surrounds the brain and spinal cord. The Histiocytosis Research Program is studying proteins that are involved in Histiocytosis-related nerve problems.

Medical information. Medical details associated with the biology samples will help determine the clinical significance the genes, proteins and cells identified in the Histiocytosis research studies.

How can I participate in this research?

If you are interested in participating in the Histiocytosis Research Program, you are invited to contact Dr. McClain or Dr. Allen so that they can send you information and a consent form for this study that is approved by the Institutional Review Board for Baylor College of Medicine and Affiliated Institutions.

Dr. McClain, Dr. Allen or a staff member will then contact you by phone to discuss the consent form. If you are interested in participating after that conversation, you can then sign and return the consent form by FAX, mail, e-mail or FedEx (a prepaid FedEx airbill can be provided).

After answering your questions and receiving a signed consent form, the Histiocytosis Research Program team can discuss specific instructions for collection and shipping of tissue samples with you and your doctors.


Please contact us if you are interested or if you and/or your physicians have other questions about the Histiocytosis Research Program.

Kenneth McClain M.D., Ph.D. (klmcclai@txccc.org)

(832) 822-4208


Carl Allen M.D., Ph.D. (ceallen@txccc.org)

(832) 824-4312


Mailing address:

TXCCC Histiocytosis Lab
Texas Children's Hospital/Feigin Center
Rm C1070.01L
1102 Bates Street
Houston, Texas 77030

Posted by Sydney Salem Golding Fund

GRANTS FOR HLH RESEARCH AWARDED!!!!

Good news!!!


The National Heart Lung and Blood Institute (NHLBI) has awarded 3 separate grants for HLH research to Dr. Michael Jordan at Cincinnati Children's Hospital. These grants total approximately $640,000 per year for 2009-2011.

This research is focused on developing an animal model of HLH to test the hypothesis that perforin-dependant cytotoxic killing of selected dendritic cells by CD8+ T cells limits the entry and/or persistence of antigen in DC populations, and thereby limits immune activation.

To test this hypothesis, the research will pursue the following specific aims:

1.) Define how antigen handling and presentation differ between WT and prf DC subsets after LCMV infection.
2.) Determine whether CD8+ T cells are the principle cell type that suppresses DC stimulatory function via a perforin-dependant mechanism.

This project will lead to better understanding of how cytotoxic function regulates the immune response and lead to improved therapies for patients with HLH and perhaps many other immunopathologic disorders.

You can read more about the grants and the research at the following link:

http://projectreporter.nih.gov/reporter_searchresults.cfm?&new=1&icde=2287115&loc=2&CFID=22616993&CFTOKEN=82756898

RACE FOR A CURE - liam's lighthouse foundation and NASCAR

Hi everyone. As most of you know, I am a physical therapist. One of my patients is a nascar fan and saw there was a contest that would help liam's lighthouse foundation get some recognition and bring awareness to Histiocytoisis. He designed a car to represent liam's lighthouse foundation and what a great job he did. I am very touched that he went out of his way to do this for us. My patient, Brook, decided to design this car and hopefully round up enough votes for the car to make it to the end and win the contest. If the car is picked to win, Toyota will design a car just like the one you see after clicking on the link below. The car will be featured at the Nascar Allstar Race in May. The car will lead all the drivers around the track to take the green flag to start the race. He told me he thought there was no better stage than that to hopefully bring some awareness and recognition to this rare disease than in front of MILLIONS of Nascar fans at the race and watching on tv.

So please, take a few seconds to vote for the car. The only way to WIN is to accumulate lots of votes. Please help out and let's do our part for Liam and for all the current children with this disease, previous children who have suffered/battled and lost the fight, and for those children in the future.

FEEL FREE TO SHARE THIS WITH ANY AND ALL FRIENDS VIA... EMAIL, FACEBOOK, TWITTER OR HOWEVER YOU FEEL

PLEASE VOTE!!!!! PLEASE NOTE... YOU CAN GO ON THERE AND VOTE EVERY DAY. THE VOTING IS ONLY OPEN FOR 15 DAYS ONCE CARS ARE APPROVED. THE CAR GOT APPROVED TODAY.

SCROLL ALL THE WAY DOWN AND YOU WILL SEE THE LINK... CLICK ON THE LINK AND VOTE, REMEMBER YOU CAN VOTE EVERY DAY!!!!!!

THANK YOU ALL FOR TAKING THE TIME TO READ THIS AND FOR HELPING US RAISE AWARENESS IN THE FIGHT AGAINST HISTIOCYTOSIS!!!!

LIAMSLIGHTHOUSE/HLH proudly sponsored by OUTLAW10
http://www.sponsafier.com/

Race For A Cure- liam's lighthouse foundation and NASCAR

Time:1:00PM Saturday, February 20th to March 7 12:00am

Location: http://www.sponsafier.com/share/52829

HELP SUPPORT DAN JARKIEWICZ SHAVE HIS HEAD FOR ST. BALDRICK'S

Dan is the father of a beautiful histio warrior named Ally.  Her caring bridge site link is on the left side of this page.  Thanks to those of you who have already sponsored Dan to shave his head for St. Baldrick’s!​ We really appreciate it! If any of you have not yet donated, but are interested in sponsoring Dan and helping to raise money for childhood cancer research, please go to the link below and donate. It is quick and easy, and your donation is tax-deducti​ble. For those of you who would like to donate but who are not computer savvy, you can also donate with cash or check, just email Dan at jark555@yah​oo.com, and he will tell you how to go about donating. Even if you don’t have a lot to give, please remember that any little bit helps. If everyone on Team Ally donated just $5 or $10, we could probably raise several thousand dollars to help save kids’ lives - Miss Ally Pumpkin is very popular, you know! Thanks in advance to all those of you who donate! Also, if there are any oncology parents out there who would still like to have their child be an Honored Child at the event, we would love to honor them. Just email Dan and we will help you out with that.


http:/​/www.stbald​ricks.org/p​articipants​/jark

Around the World in Eight Wineries! Keuka Lake,NY

Sample Wines and Regional Dishes A Fundraiser Bus Trip Supporting:

liam’s lighthouse foundation

Trip Details:

Saturday, April 17, 2010

Depart: 7am Viewmont Mall parking lot, Clark Summit, PA

Cost: $79.00 per person

Includes: bus transportation, wines and foods at eight wineries on the Keuka Lake wine trail, also supports liam’s lighthouse foundation!

To reserve a spot, contact April Zambetti 570-249-0214.

THANK YOU SO MUCH, APRIL!  IT SOUNDS LIKE SO  MUCH FUN! WISH I COULD BE THERE!