CAYENNE WELLNESS CENTER AND CHILDRENS FOUNDATION INC

We currently deliver support, advocacy, and educational services to 250 number of support group members and their families, the estimated 600 we reach through our canvassing events, as well as the 200 number of physicians, nurses, and nursing students and healthcare providers that attend our educational seminars each year. Through these activities, our goal is to empower patients, ultimately reducing the number, frequency, duration, and severity of patient hospitalizations. The impact is measurable. In certain cases, our members have reduced their hospital visits from 6-7 per year to 1-2 per year. When a patient can say that it has been more than 18 months since their last hospitalization because they have been using the self-care and pain management practices learned in our support groups, that impact is not only measurable, it is significant and life-changing.

Without these services, the impact can be devastating. Each time we get a call from a member in need of care that has been turned away from a hospital unable or unprepared to treat their symptoms related to Sickle Cell Disease, we know there is more work to be done. The average age of mortality related to SCD in the state of California is age 25 for women and 30 for men - that is a staggering 15 years younger than the national averages for men and women. It is not surprising, considering there are only seven comprehensive SCD treatment centers in the nation; an extremely limited number of hematologists are adequately trained to treat patients experiencing SCD symptoms. In fact, up until 2016, there were 2 centers in the state of California and now there is just one, indicating that access to quality care is worsening. As part of our educational programs, our goal is to increase the number of treatment centers prepared to treat SCD patients by delivering in-service training at each major regional hospital.

We currently deliver support, advocacy, and educational services to 250 number of support group members and their families, the estimated 600 we reach through our canvassing events, as well as the 200 number of physicians, nurses, and nursing students and healthcare providers that attend our educational seminars each year. Through these activities, our goal is to empower patients, ultimately reducing the number, frequency, duration, and severity of patient hospitalizations. The impact is measurable. In certain cases, our members have reduced their hospital visits from 6-7 per year to 1-2 per year. When a patient can say that it has been more than 18 months since their last hospitalization because they have been using the self-care and pain management practices learned in our support groups, that impact is not only measurable, it is significant and life-changing.

Without these services, the impact can be devastating. Each time we get a call from a member in need of care that has been turned away from a hospital unable or unprepared to treat their symptoms related to Sickle Cell Disease, we know there is more work to be done. The average age of mortality related to SCD in the state of California is age 25 for women and 30 for men - that is a staggering 15 years younger than the national averages for men and women. It is not surprising, considering there are only seven comprehensive SCD treatment centers in the nation; an extremely limited number of hematologists are adequately trained to treat patients experiencing SCD symptoms. In fact, up until 2016, there were 2 centers in the state of California and now there is just one, indicating that access to quality care is worsening. As part of our educational programs, our goal is to increase the number of treatment centers prepared to treat SCD patients by delivering in-service training at each major regional hospital.

Cayenne Wellness Center is the only existing organization in Southern California geared towards adults living with SCD.

Our mission is to offer advocacy and educational resources that empower adults with sickle cell to manage their disease through self-care practices, expect professional treatment from healthcare providers, and achieve the highest quality of life possible. We do this by offering monthly support groups at three locations -- Los Angeles, Antelope Valley, and Loma Linda. The group is free of charge to all and we have guest speakers who speak on the various complications that can occur as adults get older. Previous talks have focused on how SCD affects eye health, leg ulcers, and pulmonary hypertension. We find that adults with SCD armed with knowledge can take better care of themselves, have less frequent hospitalizations, and ultimately achieve better quality of life. We serve as advocates for patients with their doctors and hospital team. As a result, the adults have found the Sickle Cell Adult Support Groups to be invaluable to the support of their wellbeing. We host an annual Educational Seminar bringing together physicians, nurses, patients and community members on current trends in sickle cell disease pain management. There are featured presentations that include NIHs pain management protocol, the Joint Commission of Hospitals discussion for patients to advocate for best care practices, and highlights on clinical trials. Our advocacy efforts include the dissemination of a comprehensive e-booklet with information on the treatment and management of SCD. Our goal in 2016 is to distribute the material on thumb drives that patients can carry with them and have ready for access by any healthcare provider at the time of treatment.

Since 2000, Cayenne Wellness Center and Children's Foundation has accomplished the following:

Cayenne Wellness Center: since the year 2000, we have offered nutritional wellness and educational resources to patients, to the community and to healthcare providers. In 2007, we began the Unveil Sickle Cell project. September is Sickle Cell Disease Awareness Month and a plethora of activities were created to celebrate the month. Educational seminars (which continue today), Walk-a-Thon, Advocacy, Canvassing, Inservice Training and social events. Through a grant with the SDOP, we were able to support our mission - serving others.

We currently deliver support, advocacy, and educational services to 250 number of support group members and their families, the estimated 600 we reach through our canvassing events, as well as the 200 number of physicians, nurses, and nursing students and healthcare providers that attend our educational seminars each year. Through these activities, our goal is to empower patients, ultimately reducing the number, frequency, duration, and severity of patient hospitalizations. The impact is measurable. In certain cases, our members have reduced their hospital visits from 6-7 per year to 1-2 per year. When a patient can say that it has been more than 18 months since their last hospitalization because they have been using the self-care and pain management practices learned in our support groups, that impact is not only measurable, it is significant and life-changing.

Without these services, the impact can be devastating. Each time we get a call from a member in need of care that has been turned away from a hospital unable or unprepared to treat their symptoms related to Sickle Cell Disease, we know there is more work to be done. The average age of mortality related to SCD in the state of California is age 25 for women and 30 for men - that is a staggering 15 years younger than the national averages for men and women. It is not surprising, considering there are only seven comprehensive SCD treatment centers in the nation; an extremely limited number of hematologists are adequately trained to treat patients experiencing SCD symptoms. In fact, up until 2016, there were 2 centers in the state of California and now there is just one, indicating that access to quality care is worsening. As part of our educational programs, our goal is to increase the number of treatment centers prepared to treat SCD patients by delivering in-service training at each major regional hospital.

Children's Foundation: in 2005, we began the Machao Orphanage Foundation. We began with 13 orphans and now house 43 orphans. We have built dormitories, latrines, bath house, provided water and solar energy, built a greenhouse, chicken coop, agricultural sustainability for children residing in Makeuni, Kenya. In 2016, the children's foundation hopes to raise $10,000 for tuition, and $3,000 for shoes, sanitary kits, seeds, and greenhouse tarp.