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5K to Fight Histio Puts Spotlight on Rare Diseases
7th annual event hosted by Liam’s Lighthouse Foundation to raise awareness and money for histiocytic research.
WHAT: 5K to Fight Histio
WHO: Liam’s Lighthouse Foundation
WHERE: Hudson River Park – Pier 84
555 12th Ave
New York, NY 10036
WHEN: Sunday, July 21, 2019 from 8:00 a.m. - 12:00 p.m. ET
On July 21, 2019, the annual 5K to Fight Histio will bring together families and leaders in the histiocytosis community to raise awareness about and money to support Hemophagocytic Lymphohistiocytosis (HLH) and histiocytic disorders. Now in its 7th year hosted by Liam’s Lighthouse Foundation, the 5K run/walk will take place at New York City’s Hudson River Park with proceeds funding cutting-edge medical research.
“Seven years ago, the 5K started out as a group of friends trying to support a grieving mother who lost her 20-month-old to HLH. In that short time, we’ve not only raised thousands of dollars to support critical research, but more importantly we’ve created a supportive community for those impacted by HLH and other histio disorders,” said Michelle Schulze, president and founder of Liam’s Lighthouse Foundation. “We’re excited to host hundreds of histio families from all over the world – including South Africa – at this year’s event, where we’ll come together to celebrate life and the progress we’ve made in taking on these rare disorders.”
Histiocytic disorders are a group of life-threatening diseases that often go misdiagnosed or underdiagnosed as initial symptoms may mimic other problems such as common infections. Symptoms may include persistent fevers, rashes, enlarged spleen, liver and/or lymph nodes, etc. A swift diagnosis is key to improving outcomes, as are expanding treatment options for these patients.
To learn more about HLH and other histiocytic disorders as well as Liam’s Lighthouse Foundation, please visit www.LiamsLighthouseFoundation.org.
There are not enough words to describe our THANKS to the Sobi-North America team for supporting our rare community for Histiocytosis Awareness Month! On behalf of the patients and angel families recognizing their names on this shirt, WE THANK YOU!!
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
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