Every day living without Sean is a struggle. Every day I need to consciously make a decision to be happy, to feel joy to the fullest extent of my ability. It helps me immeasurably to give back in Sean’s name.
In line with our mission statement, the funds of Sean Fischel Connect have benefited the following organizations:
Sean Fischel Connect Inc. was started to honor the memory of my son, Sean Michael Fischel, who lost his life after battling a rare disease called HLH (hemophagocytic lymphohistiocytosis). Our hope is to keep Sean’s light shining in the hearts of others. Our mission is for the charitable purpose of supporting children’s health and well being, encouraging them to connect and appreciate the impact they have on others and to raise awareness and funding for the research and treatment of childhood diseases.
Dr. Edward M. Behrens, Chief of the Division of Rheumatology at The Children's Hospital of Philadelphia and his team in the lab are working towards a cure for Hemophagocytic Lymphohistiocytosis (HLH).
The current treatment protocol for HLH includes a number of different drugs including intense chemotherapy which wipes out the entire immune system, making patients more susceptible to an infection which when combined with HLH has devastating effects.
Dr. Behrens and his team are now looking at a more focused approach to treatment and have made a remarkable breakthrough in their research. They have discovered a new pathway that contributes to the development of HLH. What is most exciting is they can use this pathway to stop the disease in its tracks. By blocking a specific molecule in animal models with HLH, they have been able to halt and eliminate the progression of HLH. Time and time again, when this approach is used in the animal model, progression of the disease is halted and the animals return to virtually normal health. The animal model shows proof of principle for a dramatically more effective treatment in HLH and the drug used has already been successfully studied in humans for other conditions.
The next step in this ground breaking research is to gain a comprehensive understanding of the drug and explain how it is used to stop HLH rather than for the disease for which it is currently being studied. The ability to understand and explain how this drug works will enable Dr. Behrens and his team to advance the treatment, one step closer to human clinical trials and ultimately a cure.