PCOS CHALLENGE INC

The National Polycystic Ovary Syndrome Association

aka PCOS Challenge: The National Polycystic Ovary Syndrome Association   |   Atlanta, GA   |  https://pcoschallenge.org

Mission

PCOS Challenge: The National Polycystic Ovary Syndrome Association raises public awareness about PCOS and helps women and girls with the disorder overcome their symptoms and reduce their risk for life-threatening related diseases such as type 2 diabetes, cardiovascular disease and cancer. Serving over 50,000 members, PCOS Challenge is the leading nonprofit support and advocacy organization globally that is advancing the cause for women and girls with PCOS. PCOS is a genetic, hormone, metabolic and reproductive disorder that affects 10-15 percent of women. It is one of the most common human disorders and the most common endocrine (hormone) disorder and cause of infertility in women.

Notes from the nonprofit

We have surveyed over 40,000 women and it is clear that there are serious and systemic problems in healthcare regarding PCOS diagnosis, treatment and support. These problems are compounded by the general lack of awareness and education about the condition, particularly among those who are responsible for protecting public health, making funding decisions and those who are in a position to influence healthcare policy. For far too long, the calls for help by millions affected by PCOS have gone unanswered.

PCOS is a genetic, hormonal, metabolic and reproductive disorder that affects 10-15 percent of women. It is the leading cause of female infertility and has devastating effects on women's and girls' quality of life due to symptoms including excess facial hair growth, acne, hair loss, depression and obesity. Women with PCOS constitute the largest group of women at risk for cardiovascular disease and type 2 diabetes. The National Institutes of Health estimates 50 percent of women with PCOS will become diabetic or pre-diabetic before age 40. Additionally, some studies have shown women with PCOS to be at higher risk for endometrial, ovarian and breast cancer. Research published in the Journal of Clinical Endocrinology and Metabolism also found women with PCOS are twice as likely to be hospitalized as other women.

Despite affecting 10-15 percent of women, PCOS support, awareness and education organizations receive less than 0.1 percent of the corporate, foundation, government and community funding that other major health conditions receive. This lack of awareness and prioritization has led to well documented education and healthcare practice gaps impacting millions of women and families. Through our PCOS Challenge programs, awareness symposia and our other efforts, we have taken a leadership role in addressing these education and healthcare gaps as well as the expressed needs of tens-of-thousands of PCOS patients. Please support us in our efforts.

Ruling year info

2010

Executive Director

Sasha Ottey

Main address

931 Monroe Drive NE Suite A-470

Atlanta, GA 30308 USA

Show more contact info

EIN

26-3827259

NTEE code info

Specifically Named Diseases (G80)

Alliance/Advocacy Organizations (G01)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

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

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Communication

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?

PCOS Awareness Symposium

The PCOS Awareness Symposia are a national series of educational events that bring together wold-leading clinicians, researchers, hundreds of women with PCOS and their supporters for a day of sharing experiences, insights and the latest updates about polycystic ovary syndrome.

The PCOS Awareness Symposia help women and girls affected by PCOS become proactive about their health and discover strategies and resources to overcome their symptoms and reduce their risk for life-threatening related diseases such as cancer, diabetes and cardiovascular disease.

The PCOS Awareness Symposia were created to address seven identified PCOS education and healthcare practice gaps related to:

1) Diagnosis
2) Nutrition, Obesity and Weight Management Counseling
3) Cardiometabolic Risk Education and Disease Management
4) Fertility Management and Reproductive Health
5) Hair and Skin Treatment
6) Mental Health
7) Integrative Care

The seven education and healthcare practice gaps were identified through surveys of over 40,000 PCOS Challenge members; two pre-program questionnaires and symposia evaluations of over 1,000 PCOS patients; data logged from six years of online and telephone inquiries; the U.S. national award-winning PCOS Challenge television series which chronicled the struggles and life transformation of 10 women with PCOS; and more than 130 radio shows with PCOS Challenge members and many of the world’s leading PCOS researchers and clinicians.

Population(s) Served

The PCOS Challenge® television show, produced and hosted by Sasha Ottey.

PCOS Challenge is a groundbreaking 13-week cable television series created to improve the lives of women with PCOS with the help of health and medical experts. The series addresses common PCOS symptoms and related conditions including infertility, diabetes, obesity, heart disease, anxiety and depression, and hirsutism.The goal of the PCOS Challenge television series is to educate, inspire and spread awareness about PCOS while helping women with the condition to live healthier and happier lives.The ten women participating in the series receive guidance from three main experts – fitness coach Josef Brandenburg, nutrition coach and registered dietitian Rebecca Mohning, and emotional wellness coach clinical psychologist Ruth Wittersgreen. The cast of women also receive supplemental advice from other experts including an endocrinologist, dermatologist, internist, naturopathic physician, lipidologist, acupuncturist and others.

Population(s) Served

The PCOS Challenge radio show informs people about PCOS and other related conditions. The popular radio show features interviews with renowned PCOS researchers and clinicians, New York Times best-selling authors and real life stories from women with PCOS.

Population(s) Served

The PCOS Challenge magazine features interviews, PCOS content, nutrition tips and research based articles about polycystic ovary syndrome and related conditions from leading health and medical experts. (Also available in Spanish)

Population(s) Served

As part of a multi-year endowment from PCOS Diva and matching funds from partner organizations, PCOS Challenge, Inc. offers grants up to $500 to help women and girls struggling with hair and skin issues related to polycystic ovary syndrome. The PCOS Diva/PCOS Challenge Confidence Grant assists with the costs associated with dermatology treatments, laser hair removal or electrolysis treatments which are not covered by insurance.

The PCOS Confidence Grant is a significant step forward in addressing a neglected area of PCOS and women's health. Many healthcare, insurance and granting organizations, as well as others who are in a position to help, are unaware of the pervasiveness, severity and impact of the hair and skin issues that many women and adolescents with PCOS face. PCOS is the most common endocrine disorder in women and too often the serious hair and skin issues of women with PCOS are being dismissed as merely cosmetic, instead of being treated as medical problems. As such, the calls for help by millions of girls and women affected by PCOS are largely going ignored by major institutions and necessary treatments such as electrolysis and laser hair removal are not being covered by insurance, making them difficult to afford. The hair and skin issues that many girls and women with PCOS face can be scarring to their social development, and contribute to some dropping out of school, leaving their careers and withdrawing from society. More needs to be done, and PCOS Challenge is happy that we are able to help address this major gap in healthcare.

Population(s) Served

Women with PCOS constitute the largest group of women at risk for developing type 2 diabetes and cardiovascular disease. PCOS Challenge offers limited health screenings at its national PCOS Awareness Symposia in partnership with local health systems, physicians, nursing professional associations and others to help identify and reduce PCOS patients' risk of type 2 diabetes, cardiovascular disease, stroke and other conditions. Health screenings include Hemoglobin A1C, blood pressure, sleep apnea questionnaires and other measures to give patients a better picture of their health and to help identify their risk for numerous diseases related to PCOS.

Population(s) Served

Most people have never heard of PCOS despite it being one of the most common human disorders, the most common cause of female infertility and the most common endocrine disorder in women, which can lead to type 2 diabetes, cardiovascular disease and cancer. It is estimated that over 50 percent of women with PCOS are going undiagnosed. It often takes women up to seven doctors and several years to get diagnosed. Moreover, PCOS Challenge has found that over 93 percent of people that the organization encounters at local health fairs have never heard of PCOS. The majority of healthcare providers the organization encounters at health fairs also have very limited knowledge of PCOS, diagnostic criteria, therapies and available support resources for PCOS patients. To help combat these major awareness, education, diagnosis and support problems, PCOS Challenge participates in health fairs to help educate members of local communities to help: make families the first line of defense against the condition; undiagnosed patients recognize PCOS symptoms and get screened; expand the national base of active PCOS advocates; healthcare providers recognize PCOS signs and symptoms and get those patients exhibiting symptoms screened, diagnosed and connected with appropriate treatment and support resources.

Population(s) Served

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
Related Program

PCOS Awareness Symposium

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Held live regional events educating patients and healthcare providers on the latest evidence based treatment and management options for PCOS.

Number of clients reporting increased knowledge after educational programs

This metric is no longer tracked.
Totals By Year
Related Program

PCOS Awareness Symposium

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

98% of attendees increase their knowledge about polycystic ovary syndrome.

Number of participants reporting change in behavior or cessation of activity

This metric is no longer tracked.
Totals By Year
Related Program

PCOS Awareness Symposium

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

83% of attendees learn things that will change the way the manage PCOS. 77% learn things about PCOS that their doctors never told them.

Number of public service announcements created

This metric is no longer tracked.
Totals By Year
Related Program

Community and Healthcare Provider Outreach

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

PCOS Challenge produced audio and video public service announcements that were aired on terrestrial radio and streamed online.

Number of national media pieces on the topic

This metric is no longer tracked.
Totals By Year
Related Program

Community and Healthcare Provider Outreach

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Received coverage from over 250 media outlets including six major national placements with a reach of 83 million households.

Number of volunteers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Volunteers for program specific and year-round opportunities.

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.

1) Increase awareness and raise the profile of PCOS among the general public, undiagnosed patients, health and medical professionals, the business community, potential donors, and government agencies.

2) Engage tens of thousands of people every year around PCOS education, support, fundraising, research and related activities.

3) Enhance PCOS Challenge health programs to further improve the lives of women with PCOS and help reduce their risk for life threatening related conditions.

4) Develop training to help improve the clinical and diagnostic skills of healthcare providers to better treat the condition.

PCOS Challenge pioneered the development of The A.E.E.A.R Model (TM):

AWARENESS
Increase awareness and raise the profile of the condition among the general public, undiagnosed patients, health and medical professionals, the business community, foundations, potential donors, and national, state and local government agencies with: celebrity advocates; media interviews; PCOS public service announcements; and strategic partners, key influencers and opinion molders.

EDUCATION
Increase education among the general public about PCOS symptoms and risk factors for related diseases. Help make families the first line of defense for diagnosing the condition. Increase education for physicians and other healthcare professionals to improve: competence in the field of PCOS; performance relating to quality of care for women with PCOS; and patient outcomes.

ENGAGEMENT
Engage patients and their supporters; physicians and other healthcare professionals; businesses; communities; support and advocacy groups; and media outlets with high quality multimedia and multichannel programming dedicated to PCOS and related conditions; outreach campaigns; research fundraising activities; screenings; education programs; cause marketing initiatives; extensive PR and publicity campaigns including interviews, public service announcements, feature articles and news packages.

ACCESS
National referral database for patients of PCOS specialists including OBGYN's, fertility specialists, cardiologists, endocrinologists, dermatologists, lipidologists, nutritionists, integrative care and other healthcare professionals. Provide increased access to healthcare resources for women and families, including those in rural and economically disadvantaged communities.

RESEARCH
PCOS Challenge is partnered with many of the leading PCOS research centers globally and helps support their recruiting and research efforts. In the near future, PCOS Challenge will begin its own research in areas of PCOS not extensively studied.

PCOS Challenge has achieved a significantly higher capability and maturity level compared to peer support organizations when it comes to media, engagement and outreach.

PCOS Challenge's track record include:
- Fastest growing PCOS support organization (40-50 percent per year)
- The only regular multimedia support network dedicated to women with PCOS
- The only support organization with multimedia and multi-channel support and educational programs dedicated to women with PCOS including the PCOS Challenge radio show, magazine and national award winning cable television series
- The development and implementation of the AEEAR Model to extend Awareness, Education, Engagement, Access and Research to the PCOS community.
- The regional and international PCOS Awareness Symposia

Since its programs began in 2009, PCOS Challenge has helped many women find answers that have helped them overcome their struggles with infertility, weight gain, anxiety and depression and reduce their risk for life-threatening related conditions.

Additionally, the PCOS Challenge - PCOS Awareness Symposia are helping to address education and healthcare gaps adversely impacting the health of millions of women and girls with polycystic ovary syndrome.

According to the PCOS Awareness Symposia post evaluations:
- 98% increase their knowledge about PCOS
- 77% learn things their doctors never told them about PCOS (and links to related conditions)
- 83% learn things that will change the way they manage PCOS

Financials

PCOS CHALLENGE INC
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Operations

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

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PCOS CHALLENGE INC

Board of directors
as of 5/28/2019
SOURCE: Self-reported by organization
Board chair

Sasha Ottey

PCOS Challenge, Inc.

Sasha Ottey

No Affiliation

William Patterson

The Baron Solution Group

Dawn Ellis

No Affiliation

Barry Johnson

No Affiliation

N Kali Mincy

No Affiliation