CAYENNE WELLNESS CENTER AND CHILDRENS FOUNDATION INC

aka Cayenne Wellness Center   |   Glendale, CA   |  www.cayennewellness.org

Mission

The mission of Cayenne Wellness Center: To increase the quality of life for individuals diagnosed with sickle cell disease in California by ensuring expert, unbiased, and comprehensive care. This mission is part of a broader vision of (1) a medical system which effectively addresses the unique needs of individuals with sickle cell disease and (2) patients who are empowered and equipped to advocate for themselves. In 2005, we began the Machao Orphanage Foundation serving to date 43 orphans in Makeuni, Kenya (East Africa).

Ruling year info

2004

Founder and Executive Director

Dr. Carolyn Rowley

Main address

PO Box 3856

Glendale, CA 91221 USA

Show more contact info

EIN

81-0621107

NTEE code info

Health Support Services (E60)

Other Housing, Shelter N.E.C. (L99)

Counseling Support Groups (F60)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

MACHAO Orphanage Foundation

Machao Orphanage Foundation is a subsidiary of Cayenne Wellness Center and Children's Foundation. MACHAO is an orphanage located in Makueni, Kenya that houses, feeds, and supports education initiatives to 43 children. Approximately 95% of the children have lost their parents/guardians to the AIDS pandemic.

Population(s) Served
Children and youth
People of African descent

Cayenne hosts three free support groups per month; each one in a different area of Los Angeles County. The support groups are open to the entire community and geared toward persons with Sickle Cell Disease (SCD), persons with Sickle Cell Trait (SCT), and caregivers/parents of young people with SCD or SCT. We focus on nutrition, holistic health initiatives, advocacy movements to raise awareness, pain management, mental health, and updates on SCD health.

Population(s) Served
Adults

Cayenne Wellness Center's annual sickle cell disease educational seminar has been held annually since 2005 in California. The seminar is intended to inform California physicians, nurses, patients and community members on current trends in sickle cell disease, clinical trials and pain management.

Patients, physicians, physician assistants, nurses, nurse practitioners, nursing students, and other healthcare professionals are encouraged to attend with their practice managers.

Population(s) Served
Adults
Caregivers

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health, Ethnic and racial groups, Age groups

Related Program

Annual Sickle Cell Disease Educational Seminar

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Case management notes, Community meetings/Town halls,

  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects,

  • What significant change resulted from feedback?

    We created three new programs in 2021: miniSeminars which address topics our community wants to learn more about (The Brain and Sickle Cell Disease; Sleep and Sickle Cell Disease, and Mental Health and Sickle Cell Disease); Sickle Cell Disease Emerging Adults Transition Program; 1st Annual Hispanic Heritage and Sickle Cell Disease Symposium, and Racism and Sickle Cell Disease to name a few.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    It is difficult to find the ongoing funding to support feedback collection,

Financials

CAYENNE WELLNESS CENTER AND CHILDRENS FOUNDATION INC
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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CAYENNE WELLNESS CENTER AND CHILDRENS FOUNDATION INC

Board of directors
as of 11/15/2021
SOURCE: Self-reported by organization
Board co-chair

Ms. Shona Markham


Board co-chair

Mr. Gary Johnson

Ericka Carr

Realtor

Gary Johnson

Business Owner

Karen Shea

Kimberly Ducree

MediaMation, Inc.

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 01/30/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Black/African American/African
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 01/29/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.