DINE FOR A CURE and ST. BALDRICK'S HUGE SUCCESSES!

How did “Dine For A Cure” turn out? Well, it was fantastic!! The event took place at JUN'S Japanese Restaurant, Colorado Springs, CO.  The day started out with an introduction from Jun. Amanda from the Colorado Bone Marrow Donor Program was there to help get new donors registered. I started out with a somewhat short (although I probably went on and on more than I should have) power point presentation to highlight Liam’s story, what HLH is, what the foundation’s all about, what our present and future goals are, and how everyone can help. To say I was nervous was an understatement, but I knew what had to be done. I spoke about the importance of becoming a bone marrow and blood donor and what is involved in the processes. After the presentation concluded, the meal began. We had a great turn out and what a meal! It was so good I have to tell you all about it. There were 6 courses plus dessert. The first course was miso soup and a cold Japanese noodle salad paired with Nigori unfiltered sake. For those of you who do not know what sake is, it is a rice wine and is so good! The second course was a sushi roll appetizer paired with Holy Cross (winery here in Colorado) Reisling. The third course was Roy’s tuna tower paired with Masumi cold sake. The fourth course was pork chashu paired with Turner Road Shiraz. The fifth course was Kobe steak paired with Umensishki cold sake. If that wasn’t enough, the sixth course was Butterfish. By this time, everyone was drooling (not literally of course) as the food was just phenomenal! I have never had butterfish before and I just have to say, WOW! It was so juicy and tender and almost melts in your mouth. People couldn’t stop talking about everything that was served. Each course was preceded by the chef coming out and explaining what everything was and how it was prepared, which added such class and elegance to this dining experience. (Gee, do you think I could be a food critic or what?) Definitely worth the money since $30.00 of everyone’s cost was donated to the foundation and is tax deductible. Finally, the dessert was a sushi style dessert roll consisting mostly of fruit (strawberries, bananas, avocado) and chocolate paired with Choya plum wine. It looked just like a regular sushi roll. Absolute perfection! Many people were asking Jun if it was on the regular menu and he said that it was a new item and will be added to the menu, but they haven’t come up with a name for it yet. HERE IT IS. THE BEST NEWS YET… Apparently, many people had suggested he name it LIAM’S ROLL, and so, it is now named LIAM’S ROLL on the menu!! Thank you, Jun, for honoring our precious son! Anyway, two of the people who joined us were the owners of Dance Colorado, specializing in Ballroom and Latin partnership dancing. We turned up the music and they did a little presentation for us which was amazing! Definitely wouldn’t mind going and taking those classes (hopefully I can get Chris to go)! We met some very wonderful people and made new friendships. The event was a success and I can’t thank everyone enough for coming and supporting liam’s lighthouse foundation, especially Jun and his staff for doing such a remarkable job! I was honestly craving Jun’s food the very next day! Here are some photos from “Dine For A Cure”:




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I would like to thank 2 amazing mothers for their generous donation totaling $600 to liam’s lighthouse foundation! Kellie Copp (daughter Kaylee), and Jennifer Mercereau (daughter Taylor), had separate fundraiser birthday parties for their daughters resulting in a selfless, wonderful donation for the foundation. Thank you so much for doing this! What a nice surprise to receive these generous donations! Thank you so much for your continued support and for raising awareness of HLH and histiocytosis!



ST BALDRICK’S A HUGE SUCCESS!

Dan Jarkiewicz, Ally’s daddy (caringbridge: allyjark)(also HLH), shaved his head to honor and raise money for the St. Baldrick’s foundation. Although HLH is not cancer, it is treated much the same. St. Baldrick’s raises money for childhood cancer research. This year at Dan’s event in MD, the event raised about $87,000! Absolutely amazing! Liam, as well as a few other HLH warriors were honored. Thank you to those who donated in Liam's honor and memory. Liam was also honored by the following shavees: Meghann Cicola, Sara Rawe, David Motley, Virginia V., Samantha B., and Liam Collins. Thank you all so much! Rochelle Wilkinson was able to attend with her kids and took the following photos. Rochelle’s 5 year old son, Nate, is in the photo with the green mohawk. She is also in one of the pics with Dan and Beth (Ally’s mom and dad).



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CARL PUSKAR BECOMES 4TH BONE MARROW DONOR IN HONOR OF LIAM SCHULZE

This is Carl Puskar. Carl became a bone marrow donor on May 16, 2009 (also my birthday) for a little angel named Liam. Unfortunately, he was not a match for our little Liam, but was a match for someone else in need. Carl is giving someone else a chance at life because of our little Liam. Thank you for honoring Liam..., Carl and thank you for being a wonderful human being. Carl is the 4th person to be given the gift of donating because of Liam's bone marrow drive!

DINE FOR A CURE

Please join us for our "DINE FOR A CURE" event on March 28, 2010 12:30p.m.!


$80.00 per person

A benefit for:
liam's lighthouse foundation

hosted by:

JUN JAPANESE RESTAURANT
3276 Centennial Blvd. at Filmore
Colorado Springs, CO 80907



Enjoy an elegant dining experience with a six course meal and wine pairing featuring Kobe steak and the freshest catch accompanied by a special presentation from liam's lighthouse foundation.

PLEASE help us raise money for the research of HEMOPHAGOCYTIC LYMPHOHISTIOCYTOSIS (HLH) and support these kids who continue to fight for their lives and in memory and honor of those who lost their fight!

Visit www.liamslighthousefoundation.org for more information.


PLEASE RSVP NO LATER THAN MARCH 21. PLEASE CALL 719-227-8690.

SEATING LIMITED SO CALL TODAY!!!

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