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How PCOS Challenge Is Changing the Future for Women and Girls with PCOS PCOS AWARENESS SYMPOSIUM 2017

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How PCOS Challenge Is Changing the Future for Women and Girls with PCOS PCOS AWARENESS SYMPOSIUM 2017 How PCOS Challenge is Changing the Future for Women and Girls with PCOS PCOS AWARENESS SYMPOSIUM 2017 1 MY STORY • Diagnosed in 2008 • Diagnosis was a defining moment • Very limited support resources available • Started PCOS Challenge in 2008 • One person can make a difference 2 WHO IS PCOS CHALLENGE? • The National Polycystic Ovary Syndrome Association • Registered 501(c)(3) public charity • Largest nonprofit support organization for women and girls with PCOS gloBally • Provide help for PCOS patients through television, radio and print evidence-Based content, support groups, grants, health screenings, research, and education, awareness and advocacy initiatives • Serve nearly 45,000 members • Despite size, we have very limited infrastructure and need your help to sustain and grow 3 WHO IS PCOS CHALLENGE? (Cont.) • Patient Advisory Board • Health Advisory Board • Medical and Scientific Advisory Board 4 Mission & Vision • MISSION: Raise public awareness about PCOS and help women and girls with the condition overcome their symptoms and reduce their risks for life-threatening related diseases such as diabetes, cardiovascular disease and cancer. • VISION: PCOS is treated as a public health priority. 5 PCOS ADVOCACY 6 Polycystic Ovary Syndrome: The Metabolic Disorder Wreaking Havoc on Public Health Journal of Clinical Endocrinology and Metabolism, January 2015 – Looked at hospital admissions of women with PCOS in Western Australia 2,500 vs age matched women without PCOS (25,000) 2x - nonobstetric and non-injury-related 2x - anxiety hospital admissions 2x - depression 3x - diagnosis of adult-onset diabetes 2x - illicit drugs 4x - obesity 3x - self harm 5x - hypertensive disorder 2x - mortality 4x - ischemic heart disease 4x - menorrhagia 3x - cerebrovascular disease 2x - miscarriage 2x - arterial and venous disease 9x - infertility treatment 2x - asthma 10x - require IVF Source: https://www.ncbi.nlm.nih.gov/pubmed/25532045 7 Polycystic Ovary Syndrome: The Metabolic Disorder Wreaking Havoc on Public Health • Consider polycystic ovary syndrome, first described in 1935 - now epidemic across the globe over 70 years since. • PCOS is a genetic, endocrine (hormone), metabolic and reproductive disorder that affects 10-15% of women. • Most common hormone disorder in women • 50% chance of becoming diabetic/prediabetic at young age • Most common cause of infertility in women • One of the most common human disorders 8 H. Res. 495 9 The PCOS Resolution pcoschallenge.org/resolution 10 Organizations Supporting H.Res.495 11 12 Rep. Responses! 13 14 15 16 17 UPCOMING o Congressional Briefing on Capitol Hill – September 27, 2017 o Stakeholder Meeting at the National Institutes of Health in Bethesda, MD in 2018 o Continue to garner support for H. Res. 495 until vote o PCOS Awareness activities across the country 18 The Future of PCOS 19 NOTHING ABOUT US WITHOUT US • PCOS patients should be involved in It is dangerous to make decision-making about PCOS assumptions about patients’ • Culture of advocacy wants and needs without • Culture of philanthropy talking to them. • How can we impact the greater good and be involved in something larger than ourselves? • Improved education and awareness • Improved health and quality of life 20 DONATE pcoschallenge.org/giving 21 WHY IS FUNDRAISING IMPORTANT? LESS THAN 0.1% PCOS support organizations receive less that 0.1% of the government, corporate, foundation and community funding that other major health conditions receive. Less than 0.1% of NIH funding goes toward PCOS research. 22 WHERE DO FUNDS GO? PCOS SUPPORT HEALTH AWARENESS & EDUCATION GRANTS & PROGRAMS SCREENINGS RESEARCH ADVOCACY 23 THANKS TO YOUR SUPPORT Impact of Funds of Raised for in 2016 PCOS SUPPORT PROGRAMS - Supported the expansion of our support programs which have grown By 20%. - Relaunched PCOS Challenge Magazine. EDUCATION - Help fund the expansion of our symposia in 2018 - Awarded 10 grants to women in financial and medical need with hair and skin issues with GRANTS related to PCOS. RESEARCH - Drove over 7,100 contacts to PCOS research studies. - Is helping PCOSC to Begin its own research AWARENESS & - Introduced PCOS resolution H.Res.495 in the U.S. House of Representatives ADVOCACY recognizing the seriousness of PCOS and the need for further research, improved treatment and care options, and for a cure for PCOS. 24 Contact Information Sasha Ottey Executive Director PCOS Challenge, Inc. The National Polycystic Ovary Syndrome Association Website: PCOSChallenge.org Email: [email protected] Telephone: +1 (404) 855-7244 @pcoschallenge 25.
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