PCOS Advocacy & Awareness Month 2021 [Podcast with Sasha Ottey]
‘When we come together in person, or even virtually, everyone leaves feeling more empowered and supported. It’s like a big hug in the room.” – Sasha Ottey
September is PCOS Awareness Month.
In honor of this transformative event, I spoke with Sasha Ottey, founder and executive director of PCOS Challenge which leads the way in furthering the causes of research funding, patient and doctor education, and community awareness.
Listen in (or read the transcript below) as we discuss:
- The PCOS Challenge backstory: Origin & Mission
- Advocacy Day 2021: Celebrating legislation success stories
- Patient-centered research studies: Get involved and make a difference
- PCOS Awareness Month: Explore this month’s themes, important dates, hashtags, and how YOU can add to this story of hope and healing for women
All PCOS Diva podcasts are available on:
Mentioned in this podcast:
>> PCOS Challenge
>> PCOS Active Research Studies
>> PCOS Awareness Month
>> PCOS Challenge Facebook
>> PCOS Challenge Instagram
>> PCOS Challenge Twitter
A full transcript follows.
Sasha Ottey is the founder and executive director of PCOS Challenge.
Serving 55,000 members, PCOS Challenge is the leading patient support and advocacy organization for people with PCOS. The organization touches the lives of women with PCOS and their supporters each year through television and radio programming, support groups, grants, health screenings and awareness, education and advocacy initiatives. Since PCOS Challenge began in 2008, the organization has helped women overcome struggles with infertility, weight gain, hirsutism, anxiety and depression and reduce their risk for life-threatening related conditions including type 2 diabetes, cardiovascular disease and cancer.
Sasha started PCOS Challenge after she was diagnosed with PCOS and experienced great dissatisfaction with the availability of support resources for women with the condition. As Executive Director of PCOS Challenge, Sasha built a coalition of over 70 major national and international health organizations and led the first successful legislative advocacy effort in the U.S. Congress to recognize the seriousness of PCOS, the need for further research, improved treatment and care options, and for a cure for PCOS and to designate September as PCOS Awareness Month. Sasha also created the PCOS Awareness Symposium, the largest event globally dedicated to polycystic ovary syndrome, which has educated thousands of patients and healthcare professionals about PCOS since 2013. In 2018, Sasha helped organize the first International Conference on PCOS in India for both patients and healthcare providers.
Sasha is a Clinical and Research Microbiologist with a Bachelor’s degree in Clinical Laboratory Science from Howard University and a Master’s in Health Administration from the University of Phoenix. Prior to founding PCOS Challenge, Sasha was a contract research microbiologist at the National Institutes of Health (NIH).
Happy PCOS awareness month 2021 and what better way to bring on the PCOS Diva podcast, but the founder and executive director, Sasha Ottey, to tell us about all of the happenings this month and how we can get involved. So welcome Sasha, back to the PCOS Diva podcast.
Thank you so much, Amy, for having me back on. Again, today September 1st is the world’s PCOS day that we started back a few years ago. So, just an exciting way to kick off the month and to have everyone get involved. Thanks so much for having me.
Oh, absolutely. I honestly think that there couldn’t be a better month for PCOS of awareness than September coming off of a summer where some of your PCOS Diva habits may have fallen off track. I always feel like September is kind of almost a better new year than January. It’s really an opportunity to get back on track with healthy habits. And I think the fact that it’s PCOS awareness month on top of it, just kind of adds to the importance of why it’s so critical that we take care of our health so we can manage our PCOS symptoms.
I completely agree. I think January 1st, it’s really a nice way to start off cleansing your soul, spirit, body for the rest of the year, but sometimes it’s good to get a little midway check or a little past midway, right? And try to evaluate what’s been going on and just kind of jumpstart and get a refresher if needed or change things up a little if needed. So September is a really great month for the PCOS community. As far as I can remember since I got diagnosed, before I got diagnosed, September has been kind of celebrated or used as PCOS awareness month to bring more attention to Polycystic Ovary Syndrome and how it impacts people with the disorder and our families and supporters and the entire community. So it’s a really great time to check-in and get other people in the know about this really pervasive condition that impacts so, so many millions around the world.
Yeah. And I know your organization, PCOS Challenge actually a couple of years ago, was able to push to make PCOS awareness month a recognized month by the government, correct? For PCOS awareness. Maybe you could tell us more about that and what PCOS Challenge does for women with PCOS?
Yeah. So I’ll just tell a little bit of backstory about PCOS Challenge. I founded the organization, PCOS Challenge with the National Polycystic Ovary Syndrome Association. I founded PCOS Challenge back in late 2008, early 2009, when very shortly after my own diagnosis with PCOS, and realizing that there was a lack of knowledge, awareness, and support around the condition. And as the organization started to grow, we realized that what was really missing was an advocacy force that so many other conditions and causes have, PCOS didn’t have that advocacy force. That’s bringing attention to the lack of resources for PCOS care, the lack of funding for research. So we decided to build that base of advocacy, in particular, legislative advocacy because, during our research, we realized that PCOS was barely ever mentioned in the US government. And if the government doesn’t know about it, funding for research will continue to be lacking.
So one of the first things that we decided to do was get PCOS awareness month officially designated September, which historically it had been celebrated in the community, but it wasn’t a part of the official calendar, the government’s calendar, which it now is, and which is really… It’s a kind of a win for the community, unfortunately, because it’s been previously, it felt that PCOS has been ignored, largely. And so now we have this platform, which is through PCOS advocacy, they and other PCOS advocacy initiatives led by PCOS Challenge, where as people and partners and supporters of the PCOS community can come together and let our elected officials know that this needs to be a priority. So building that strong base of support to continue advancing PCOS legislation and health policy efforts is extremely important to us and the community.
And advocacy day is usually held in the springtime. Correct?
It is. So this year, it was in March. March 4th and it was really impactful. It had to be a virtual event, our first one, our first virtual advocacy day, but people came, they showed up, we had over 245 advocates, including 64 healthcare providers. So we had researchers, physicians, naturopaths, dieticians, health coaches, people who are stakeholders from all over the PCOS community, representing 45 US states and territories. We even had some international representation there. And we met with over 237 congressional offices. And what happened subsequently was that we passed, we introduced the resolutions, we, meaning our partners on the hill representative, David Scott, Brian Fitzpatrick, they introduced the 2021 PCOS awareness resolution. And it currently has over 92 co-sponsors and senators, Elizabeth Warren and Deb Fischer are going to introduce the Senate version of that resolution.
We also, PCOS Challenge teamed up with Resolve New England to introduce a bill in Massachusetts and it’s being led by representative Nika Elugardo to have PCOS recognized in Massachusetts, in September officially recognized by the governor and other activities around PCOS awareness. So it’s a really exciting year for PCOS advocacy and that just continues to build momentum. And researchers are now reporting that they’re seeing opportunities with the words, Polycystic Ovary Syndrome on opportunities that they’d never seen before. And that’s because the community decided to come together to elevate the profile of PCOS and use our voices to create change.
Yeah, and what you’re doing is such important work. And I had the honor and pleasure to attend one of the advocacy days in person a couple of years back. And it was such a powerful experience as a woman with PCOS to be able to kind of raise our collective voice on the hill and try to make an impact to improve the outcomes for women with PCOS. And I’ve noticed that one thing that has increased is studies on PCOS. I know PCOS Challenge. I often see them in my inbox, different opportunities to participate in studies. Some of them are even paid to kind of further research into different even lifestyle factors of PCOS. Maybe you could tell us a little bit about those efforts.
Yeah. That’s one of our central focuses is that research is patient-centered, right? That’s one of our main goals is that PCOS patients are more involved in everything about research, the design, and participation. We want to work with researchers to answer the questions that we, as people with lived experiences want answered, right? So before all of these advocacy efforts, patients weren’t really that involved in the direction of research, they weren’t. I think that’s one of the issues with why there’s so many gaps around PCOS care because people with lived experiences weren’t previously involved.
So one of the things that PCOS Challenge is doing is working with the researchers and also doing our own patient centered and also some patient led research efforts, which is really exciting. And you learn more about those in the coming months, but yes, we do recruit for studies with some of our partners to help to answer some of the questions that patients want answered. So look out in your inbox or sign up on pcoschallenge.org to get our newsletters and study recruitment. It’s so important to participate in research. Amy, very quickly, I just wanted to let you know. So when I first got diagnosed with PCOS, I was told to lose weight and I was like…
Go to the gym, cut out carbs.
Yeah. But I wanted to see someone with nutrition expertise and my health insurance would not pay for me to see a nutritionist or dietician or anyone because I was not diabetic. And the very thing I was trying to prevent. And so, one of the ways that I did get some involved in, did get some nutrition advice was I joined a study on nutrition for PCOS. I was a participant in a research study and learned a lot just being a participant. And I think it’s so important. Sometimes you will learn just being participating in a research study. You learn a lot about your body and depending on the type of research that it is and certain interventions, which I would gladly join research studies that I think would provide valuable information.
That’s a great point. And I know that there’s many medical institutions. I’ve know that there’s been dietary studies done out at University of California, San Francisco. I think they do quite a bit of PCOS research. Do you have a list on PCOS Challenge of active studies that people could look at?
Yes. So that’s one of the things that we’re compiling. I actually had a meeting last week. I’m sorry, yesterday about putting out a list, a webpage to house all of the research studies, which we do on pcoschallenge.org, and we’ll make it more prominent by the time this airs so that everyone will be able to find a list of current research studies and partners. And that’s one of the things that we’re continuing to do is partner with researchers who want to get some of these questions answered.
Well, one of the things that I love about PCOS awareness month, and I’ve enjoyed this since early on, like you, I was diagnosed prior to 2009, that’s when I started PCOS Diva, but started getting involved in local PCOS events for PCOS awareness month, even earlier than that. But it’s coming together with other women with PCOS. When you feel so alone, it’s wonderful to be able to share experiences and struggles and victories with other women that understand the journey. And I think that PCOS awareness month is a great time for that. And I know that PCOS Challenge provides those kinds of opportunities. So I was wondering if you could tell us about things that are coming up this month, where you could actually kind of come together in community with other women with PCOS.
Absolutely, Amy. I think with each event where we come together in person, or even virtually, everyone leaves feeling more empowered, more supported, just there’s something that’s palpable. Even if you don’t know how to describe it, you leave with that feeling. It’s like a big hug in the room.
And so that’s why we enjoy when we do our PCOS awareness events. And so I just want to give you a breakdown of what’s happening this September. Of course, today is September 1st, PCOS is when we celebrate kick off the month with world PCOS day. And what that is, is we know that PCOS is a global issue. So we partner with patients and providers and organizations from all around the world to show how PCOS impacts our lives in our countries. And just kind of come together and to have a global kind of a party. So, that’s world PCOS day and you’ll see people changing their profiles to teal or with overlays. And please be sure to do that with a PCOS Challenge or a world’s PCOS day overlay. So we’re also doing PCOS Challenge 5k run-walk national campaign that kicks off August 29th yesterday, through December 1st.
So you have quite a bit of time to train to do a 5k however, you want to do that. Walk, run, swim, on a treadmill, however you want to complete five kilometers of physical activity. That’s the point of the PCOS 5k in addition to raising funds for PCOS Challenge programs and activities. So we continue to hope that this continues to be the largest national campaign raising awareness and funds for PCOS education support and research programs. And all of this can be found on pcosawarenessmonth.org or pcoschallenge.org. So, we’ve broken down the month of September into themes. Week one, September 1st through 4th, it’s PCOS support and advocacy week.
So we’ll be doing, just listening to stories from people about support and advocacy so you’ll have the opportunity to share your personal stories as well. Week two, September 5 through 11 is PCOS fertility, family building, and maternal health week. The PCOS Challenge family building grants opens this week and will close sometime in December. And what that grant does is provides the opportunity to a few patients or couples impacted by PCOS to get a free IVF cycle, which is incredible and incredibly generous of our sponsors to donate an IVF cycle for PCOS patients with PCOS Challenge. In week three, is PCOS lifestyle and management week. And this is a really exciting week. You can do your 5k in this week, but PCOS Challenge has partnered with Hip Shake Fitness to do fitness activities throughout this week.
And we’re going to be doing a kickoff on September 12th and close-out event on September 18th, really excited about that. And week four, September 19th through the 25th is PCOS-related disorder week, which is the connection between PCOS and diabetes, heart disease, all of that. So we’re going to be addressing all of those. Sunday, September 19th, we have the bolt for PCOS 5k in Atlanta. And Saturday, September 25th, we have the PCOS awareness symposium in-person in Philadelphia, but we also have a virtual portion of that event. So, unfortunately due to COVID, so many of us can’t be together but luckily we have the opportunity to have virtual sessions.
So PCOS awareness symposium is the biggest opportunity for education and coming together and learning from each other and learning from some of the world’s leading experts in PCOS. So please be sure to sign up on pcoschallenge.org. And the fifth week is PCOS and adolescent week. And that’s how we close out PCOS awareness month with a lot of activities, but it’s always really great to get people to come together and share our stories and learn about PCOS and help to elevate our message around why PCOS needs to be a priority and a public health priority at that.
So that sounds like an amazing month. And I’m just wondering, are those activities happening on PCOS Challenge social media? Where can people participate in those weekly themes?
Yeah, thank you, Amy, for bringing that up. So we will have activities happening on social media on Instagram and Facebook and Twitter and you can follow us, @pcoschallenge on social media, @pcoschallenge. And you can also learn about all of the events @pcoschallenge.org and pcosawarenessmonth.org. So we’re PCOS day today, a lot of lighting events will be happening around the world. Go to pcosawarenessmonth.org and find out if there’s a building lighting up teal near you, or if you can watch that on somewhere on social media. So please go to pcoschallenge.org or pcosawarenessmonth.org to find out how to participate in all the activities and follow us on social media, @pcoschallenge.
Are there any special hashtags that might be helpful?
Yes. #PCOSChallenge, PCOS awareness, PCOS awareness month. Those are really special hashtags that we use, but in every week, if you go to pcosawarenessmonth.org all of the hashtags will be listed there for each special week.
I think when you’re in the middle of your journey, or if you’ve been dealing with PCOS for a long time, you sort of take for granted that everybody knows what PCOS is. I think because you’re just living it day in and day out, and I’ve definitely find myself in that place, but it’s amazing how many people have no idea what PCOS is. And so that’s I think what’s so important about spreading the word during PCOS awareness month, especially, changing your banner on your social media profile, because you never know how some woman that suffering might find out about PCOS and it would lead to a diagnosis and helping her to feel better and manage her symptoms. So, really think about participating for yourself and for those unknown women that are dealing with health issues and they don’t even know that they have PCOS.
That’s a great point, Amy. So many people tell us that when they change their profile or use an overlay and with I’m a PCOS advocate or it’s PCOS awareness month or world’s PCOS day, someone reaches out to them who has recently gotten a diagnosis. It could be someone from your family who’s never spoken about it. I often tell the story about one of our first PCOS awareness symposium that was happening in Atlanta. One lady there, met her cousin there. Neither of them knew that the other had PCOS.
They live four hours from each other. One traveled four hours to be there. And they saw each other at the event and had no idea that the other… Their cousins. So this is really an opportunity to share that how pervasive, how many people are impacted by PCOS.
It does run in families. So if you have a PCOS diagnosis, chances are someone who is related to you also has PCOS or many other people related to you may also have PCOS. One in five people. So if you one of five women, at least one will have PCOS. So think of your friends, your families, and your coworkers, other people who may have no idea where to get support. Now, you can be a source of support for each other, or even a source of research partners, trying to dig through I guess, muddied waters of PCOS information that’s out there on the net, trying to figure out what works for you, what works best.
And sometimes sharing that information, which Amy, as we know, there is no one medication, no one type of treatment for everyone with PCOS. So that’s the really frustrating part about having PCOS for many people, but also having other people to support you, to help you through that. As you do your investigations and your trials and errors and about what works for you. I think having that support and knowing that you’re not alone is one of the best feelings that you can have as someone who is newly diagnosed or frustratingly has been diagnosed for decades without answers.
Oh, you’re absolutely right. And Sasha, I have to thank you for being that support for me very early on in my journey. Your PCOS Challenge was one of the few resources out there and you’ve been a support for me for a long time. So thank you for your persistence, your perseverance. I know when you’re out there helping people, it’s exhausting. It’s not always easy. We have to be mindful of our own health challenges and our own health to make sure that we’re focused on healing ourselves so that we can then in turn heal others. So I know it hasn’t been always easy, but I’m very grateful to you and for all the work that you do on behalf of women with PCOS and I just encourage listeners to take advantage of one of the many opportunities that PCOS Challenge is offering this month. I think it’s going to be a great month.
Thank you so much, Amy. I really want to echo the same sentiments to you. And you’ve been really a source of information, inspiration to a wide portion of the PCOS community and myself and the organization. You’ve been a generous sponsor, supporter as well. And we teamed up to create the PCOS Diva, PCOS Challenge confidence grant, which has helped so many people over the last about four years, Amy, to get electrolysis or laser hair removal or wigs or things to help with hair and skin ailments connected to PCOS that aren’t covered by insurance. So that’s huge and you’ve impacted so many lives and continue to impact lives.
And you’re so right. Sometimes, it’s hard when you’re the one who’s kind of the face of the organization or doing the public fights, so to speak and advocacy. But it’s really rewarding when you hear things like, “Oh, PCOS Diva was the first place I saw” or “Going to the PCOS awareness symposium changed my life.” These are things that continue to fuel my fire, even when I’m down, because there are times when you do feel a little knocked down, but just hearing those stories and how you touch other people’s lives is one of the most rewarding things that we continue to do.
Oh, definitely. And that’s what gets us out of bed every day and doing the work that we’re doing. So it’s an exciting month for both of us. I hope to connect with you in person soon. It’s been tough not seeing all of my PCOS allies in person to fuel me, but hopefully soon. And I hope to see listeners at one of these events or the virtual symposium definitely reach out and say hello, but Sasha, it’s a pleasure as always to have you on the PCOS Diva podcast.
Thank you so much. Always a pleasure to be here, to connect and look forward to continuing to help people. And I look forward to your listeners joining in on the PCOS Challenge events during the entire month of September and look forward to yes, soon connecting in with them again. Thank you, again.
Well, you’re so welcome and thank you all for listening and tuning in. I look forward to being with you again very soon. Bye, bye.