President of Hina Patel Foundation
Bhavana Patel
Hina Patel Foundation (HPF) was created in 2010 to honor our daughter Hina, a tribute to the beautiful life she lived and the battle she fought.
For 18 years, she struggled with Sickle Cell Disease, one minute joyfully playing and the next, crippled with excruciating pain. The helplessness we felt during her pain crises was equally agonizing – it was the worst feeling in the world for a parent. And the hardest part was the uncertainty, not knowing when disaster would strike. Through all of it, Hina maintained courage and hope. The sustained drive and passion we have to run the foundation reflects the tenacity Hina demonstrated as she suffered with the disease.
Because of what our family experienced, we are aware of the hardships facing Sickle Cell Disease patients and their families. Our goal is to do everything we can to help people suffering from the disease. Through education and support, we want to inspire and to empower them to take action for their health.
Newborn screening techniques and early improved intervention therapies have sharply lowered mortality rate in children with Sickle Cell Disease in USA. Today, approximately 90% of children make it to adulthood and are now living into their forties or fifties. However, when it comes to quality of life, we still have a long way to go. Additionally, in underdeveloped countries, many children do not make it to adulthood, so numerous challenges remain.
Progress towards a cure has been made, but we still have work to do. More research is needed. Blood and marrow stem cell transplants may offer a cure for a small number of people, but due to complications of GVHD, most unrelated transplants do not survive. Community outreach to educate is vital to our ultimate success. We encourage everyone to join us in this effort to support families who are affected and bring national attention to SCD as a public health issue.
HPF runs strictly on volunteers, and we have no paid staff. I am just phone call away for families who have concerns about managing Sickle Cell Disease, so they can be guided to proper care. I greatly thank our local community, friends and family for the support HPF has received and will continue to receive. Together, we will make a difference in improving the quality of life for individuals suffering with SCD.
