HINA PATEL FOUNDATION

The two-pronged goal of HPF is to help find a cure for Sickle Disease while also providing financial, medical and moral support for individuals and families affected by Sickle Cell Disease.

HPF works diligently to provide an understanding of the pathophysiology of Sickle Cell Disease and recent advances in the diagnosis and treatment of acute and chronic complications, to both patients and healthcare providers alike. This understanding leads healthcare providers and patients to make better informed decisions as to the most effective level of care and maintenance for the disease. A primary objective is that healthcare providers, especially in Kern County, become more aware of the recommendations for health maintenance and screening for all patients with Sickle Cell Disease. Over the next few years, the aim is to provide optimal performance in clinical and emergency settings.

To help find a cure for Sickle Cell Disease, we are helping to fund UCLA's Kohn's Lab; they have passed FDA approval and are currently conducting human trials as of 2015. Due to limited knowledge in our county and availability of healthcare professionals specializing in Sickle Cell Disease, we are working closely with a hematologist and a nurse from Kern Medical Center to coordinate care for Sickle Cell patients. Furthermore, we provide Continuing Medical Education programs to Health Care professionals and families in our community to bring sharp reductions in emergency room visits and frequent hospitalizations, thus improving a patient's quality of life.

Sickle Cell Disease can be preventable with screening and genetic counseling. We hold an annual Sickle Cell Run/Walk to bring awareness to Sickle Cell trait and other hemoglobinopathy. There are approximately 250 million people worldwide who carry the gene responsible for sickle cell disease and other hemoglobin diseases. Over 300,000 babies with hemoglobin disease are born each year.

Throughout the year, we provide awareness and education about Sickle Cell Disease origination, migration and transmission through community outreach programs and visits to schools, churches and health fairs.

One time each year, we sponsor local children to participate in a creative outdoor experience to enhance their growth and development at Camp Crescent Moon in Southern California. For these children, the camp is an opportunity to understand the disease and build a support group for themselves.

We hold monthly support group meetings for patients and their families to educate them on recent new advances of sickle cell disease to improve their quality of life and increase moral support. Additionally, we have weekly free group yoga classes for patients and families for alternative way to manage pain.

In partnership with Vision Foundation in India, HPF has screened over 4,000 people to understand the prevalence of Sickle Cell Disease as well as to spread awareness and understanding, in hopes of curbing further progression of the disease in affected communities. This partnership has served as a pivotal pillar of realization as to how little education exists in various communities about the disease and how, with just few resources, life-changing efforts can be made. Current screening has found that approximately 25% of people in tribal villages in Gujarat, India carry the Sickle Cell gene; approximately 2% of them live with Sickle Cell Disease.

With forming public/private partnership in Inida, we now have 4 comprehensive sickle cell center in Gujarat. It offers screenings for newborn babies, prenatal screenings, patient counseling, 24-hour emergency services, pain-crisis management, oxygen therapy, Hydroxyurea management, blood transfusions, laboratory work, plus x-ray and ultrasound services. The center is staffed by primary care doctors, nurses, and sickle cell counselors. A hematologist visits the center twice each month to manage patients who are on Hydroxyurea, the only medication approved to reduce sickle cell pain crises. The center has the ability to refer patients to outside sub specialists if necessary.
Our research and interaction with these individuals has shown us that proper care in the maintenance of Sickle Cell Disease has produced far more desirable outcomes in the quality and longevity of life for suffers of this disease.

Thus, continued education, screening and financial assistance in these communities helps us to determine how our efforts are making a difference in the lives of those who are not only affected by the disease, but carriers of the gene responsible for this life-threatening disease. More important for these and the multitude of other communities affected by this disease, is how to prevent the disease.

HPF works with Sickle Cell Disease of California to support legislation at local, state and national levels that are beneficial to the Sickle Cell programs. It has been an instrumental resource for HPF and this reciprocal relationship has helped to preserve the mandatory importance of newborn screening that was once in jeopardy, amongst other important endeavors. At a national level, HPF works with the Sickle Cell Disease Association of America to bridge the gap between the Sickle Cell Disease community and availability of quality education, counseling and medical support for unmet needs and comprehensive life care. In addition to this, HPF also supports Camp Crescent Moon which is hosted by the Sickle Cell Disease of California. The camp is designed for young children who have the disease to interact with each other in a fun, secure, and safe environment. Our local children attend the camp and members of HPF have served as educators of Sickle Cell Disease for participants at the camp.

Thus far, we have donated $240,000 to Kohn's Lab Research at UCLA, 70 healthcare professionals have attended and were given a CME on Updates on Sickle Cell Disease 2014. We have given numerous talks at local schools and churches to educate the general public on the importance of donating blood and being on the bone marrow registry. We have been able to provide medication and transportation to patients with Sickle Cell Disease at no charge. We have also made multiple trips to India for where we were able to screen 4000+ people for Sickle Cell gene; we found approximately 25% had Sickle Cell gene in tribal villages in Gujarat, India and 2% of them had Sickle Cell Disease. We continue to provide education to these villagers to manage the disease and most importantly, for prevention of the disease. Continual stigma of being a drug seeker still remains in adult Sickle Cell Disease survivors and our hopes is that it will decrease over time with the help of our foundation.