Alacrita, an independent research company, are looking for people who care for children with HLH, and young adults (18-30 years inclusive) who have recovered from HLH, to take part in a short study to understand how HLH affects children and the people who look after them. We are contacting you as a subscriber of Liam’s Lighthouse Foundation.
If you contact Alacrita to let them know you are interested in taking part in this study, they will first arrange to speak to you by telephone you to ask a few questions to determine whether you are eligible. This is a standard step for all studies, as researchers want to recruit people with particular characteristics.
If you are eligible, the Alacrita research team will arrange a convenient time for you to take part in an interview with a trained interviewer. This can be by telephone or in-person, either at your home or at a mutually convenient place.
If you then agree to take part in the study, Alacrita will send you a letter confirming the date, time, and place of your interview by post or email, together with more detailed information about the study and a Background Questionnaire for you to complete before the interview.
During the interview you will be asked questions about your child with HLH and your experiences of caring for them. The interview will take about an hour. You will receive a [$100/£75] voucher to cover any costs you incurred by taking part in the interview.
You are free to withdraw from the study at any point, and you do not have to give a reason. We do hope that you will take part, as your participation will contribute to vital understanding about patients and their parents/primary carers living with HLH.
If you are interested in taking part, please contact the study research team by filling out the form below to send an email to the study team at: HLH@alacritaconsulting.com
Dr Annabel Nixon
On April 1, 2011, liam's lighthouse foundation in conjunction with The Children's Hospital, Aurora, CO and The University of Colorado Medical School, sponsored Dr. Lisa Filipovich, expert in the field of HLH, to visit and provide grand rounds and lecture to pediatric fellows, residents, and attending physicians. Some histio parents and grandparents were also able to join us for a very informative day. LLF is very much focused on awareness and we were delighted about the success of the event. Thank you to Dr. Jenny Soep for helping to make this opportunity possible.
BIKE NY 5-BORO TRIP MAY 2, 2010
(By Rick Staron)
"Bike New York 2010 completed. We raised $815 for Liam's Lighthouse Foundation and had an excellent, if exhausting day. Thanks so much to everyone who contributed."
"First, the ride itself: 42 miles, through all five New York Boroughs.
After last year's rainy, wet & cold experience, this year's version could not have been more different. Natalie observed that a clock/thermometer near the VN bridge, which read 54-dgrees last year, in wind and a driving rain, indicated a temperature of 89 degrees this year."
"Given the choice, I'll take the sunshine. On a personal level, I managed to pedal up all the bridges on the tour this year, including that beast (the Verazaano bridge) at the end. Which isn't to say I never got off my bike. I did. Just not on the bridges."
"Spent at the end oft he day. And my knees hurt like crazy (I thought biking was low impact and shouldn't hurt the knees...maybe I DO need a new bike). But quite satisfied with the experience."
" And the fundraising: Last year, we raised money for Ronald McDonald House in Danville, where we spent a few days when Roger was born."
"This year,it was another easy decision to benefit Liam's Lighthouse Foundation, having followed Liam's fight against HLH very closely."
"Raising money for this foundation accounts for the lighthouses on our helmets, which were actually the result of me tapping into a crafty side I had no idea even existed. They turned out to be a big hit throughout the ride. Literally dozens of people asked us about the significance of the lighhthouses, giving us the opportunity to tell them about HLH, Liam, and the foundation (always careful to mention the website, www.liamslighousefoundation.org.)"
"As we told one family, the mom reached into her bike pouch, pulled out a $5 bill and said "Here. Add this to the cause." We did. Thank you Nina, whereever you are."
"As I said earlier, thanks so much to everybody who donated. This is a new foundation, still establishing itself, so everything makes a difference. And it is in memory of a truly incredible little boy. Liam was, indeed, a powerful warrior. I'm honored to have had the opportunity to extend that power a little."
SINCERE THANKS TO RICK, NATALIE, AND THE STARON FAMILY FOR BIKING FOR A CURE FOR HLH! YOU ARE MAKING A DIFFERENCE!
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light - house, (n): a tower with a powerful light positioned at some important point to serve as a guide.
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