We are pleased to announce that proceeds from our 2021 event will go to help fund the following research initiatives:
HLHRUXO: Use of a Response-Adapted Ruxolitinib-containing Regimen for the Treatment of Hemophagocytic Lymphohistiocytosis run by Dr. Kim Nichols lab at St. Jude Children’s Research Hospital. This trial is based on our basic laboratory research and aims to test the efficacy of a new type of drug called a JAK inhibitor for children with HLH. JAK inhibitors suppress the pro-inflammatory effects of cytokines, and in so doing, they decrease the manifestations of HLH. Although we have some support from industry, we need more funding in order to complete the trial and carry out studies to better understand whether and how the JAK inhibitor mediates its effects in patients with HLH. For more details about this trial, please click here: HLHRUXO Trial Personalized histiocytosis care with HistioTrak: (run by Dr. Ashish Kumar’s Lab at Cincinnati Children’s Hospital.) We now know that all histiocytoses are driven by acquired mutations in one of the members of the MAP kinase pathway - most commonly BRAF and MAP2K1. After development and validation of HistioTrak, a novel molecular testing method to detect rare histiocytic cells in the patient's blood, we will follow the mutation levels in blood while the patient is undergoing treatment. If the patient enters molecular remission (i.e. no detectable cells with mutation) using ultrasensitive molecular techniques, it may be safe to stop therapy without risk of relapse. In order to clinically validate this hypothesis, funds are needed to generate the prospective data on a large patient cohort. This will help develop a personalized clinical treatment algorithm for guiding physicians for their specific patient, with their specific molecular alteration about stopping target therapy without the risk of disease relapse/recurrence. FOR CALENDAR & EVENTS LISTINGS Media Contact Mary Sullivan | Mary@LiamsLighthouseFoundation.org | 401.339.2658 ***MEDIA ADVISORY*** 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 ATTEND: Register DETAILS: 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. ### |
NEWSFind out what's new at LLF by following our News Blog! Archives
July 2021
|