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.