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PCOS Advocacy News & Opportunities [Podcast]

“The lack of research has translated to the lack of knowledge of PCOS in the general public and in the medical community.” – Sasha Ottey

Sasha Ottey is at the forefront of PCOS advocacy. She and her non-profit organization, PCOS Problem, paved the way in furthering the causes of research funding, affected person and physician schooling, and group awareness. In case you are questioning what is occurring on the earth of PCOS and how one can become involved in a big or small means, tune in as we talk about:

  • PCOS Challenge’s mission and choices
  • The PCOS Diva/PCOS Problem Confidence Grant and a brand new one coming soon
  • Advocacy Day in Washington DC & tips on how to be concerned there or at house
  • Opportunities to become involved and volunteer for PCOS Problem
  • Upcoming events in cities around the U.S. together with PCOS Consciousness Weekend on September 20th in Orlando

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Talked about in this podcast:

Full Transcript:

Amy:                                    At present I’m going to be speaking to Sasha Ottey. She’s the founder and government director of PCOS Problem. And PCOS Problem is the National Polycystic Ovary Syndrome Association. If in case you have not heard of PCOS Problem but, you have to find out about them. They serve over 50,000 members. They’re the leading patient help and advocacy organization for ladies and women with PCOS, so I’m so thrilled to have you ever right here, Sasha.

Sasha Ottey:                      Thank you a lot, Amy. I’m so excited to be here and thanks for having me on the PCOS Diva podcast.

Amy:                                    Oh, you’re so welcome. You already know, Sasha, you’re one of the folks that I actually admire. I do know once I first began trying to find solutions for PCOS, there was one group on the market, the PCOS Association, which has now, type of disbanded and when that happened, I feel such as you picked up the gauntlet, and we’ve recognized each other now for quite a while, and it’s been superb what you could have completed. I just need to thanks for all of the work that you simply do and you’re a lady with PCOS so we both understand how onerous it is to care for ourselves and in addition do to the work that we do to try to help advance PCOS advocacy and consciousness.

Sasha Ottey:                      Oh, thanks a lot, Amy. You already know, I feel plenty of ladies in our place who’re ladies with PCOS and sooner or later earlier than, during or after we acquired a analysis or even in case you are lady with PCOS or a person with PCOS who hasn’t gotten that analysis, we felt sort of alone, you understand? There’s this sense of loneliness, feeling that we’re the one ones dealing with what we’re dealing with and then sooner or later, need to assist ourselves and help different individuals. So, that’s why I began PCOS Challenge and why you started PCOS Diva and other individuals and advocates in the states are the place we at the moment are, because we’re on this place where we know that we will’t do it alone and we all know that working together with our numerous experiences, working collectively will assist us to move the motion forward and advance the cause.

So, I am really excited to speak to you immediately since you’re a lady with PCOS. You understand, regardless that we might have various elements of the syndrome or various experiences, you do perceive how troublesome it may be and the way a lot we need to type of give everybody that platform to seek out their peace with the syndrome and discover ways to help themselves and others.

Amy:                                    I really like the way you stated discover their peace with the syndrome. I do know numerous ladies listening are in all probability newly-diagnosed or haven’t actually heard about PCOS Problem and the work that you simply do. I’ve had you on the podcast a number of occasions at this level. But, at present, I would like you to speak to us about all the thrilling issues which are occurring in 2019. There’s a lot of events around the corner and I would like you to let everyone know, but first, perhaps you may tell listeners what you do … What are the issues which are provided via PCOS Challenge?

Sasha Ottey:                      Thank you, Amy. I began PCOS Problem after my own analysis and the feeling dismissed by my docs and never getting access to the care that I needed. I felt alone and that this was out of my control, and I don’t need anyone else to need to feel like that. Speaking with ladies and fogeys of women with PCOS and other people from everywhere in the world, we’ve got very comparable experiences, the place one, most of us sooner or later didn’t have the assets, whether it was information concerning the syndrome or the right remedy and, Amy, as you understand and I know, there’s nobody remedy or no one technique that works the same for everyone. So, there’s plenty of trial and error concerned and information really is the key to maneuver forward. And so, PCOS Problem was born from this want to help others, but in addition assist others educate themselves concerning the syndrome. And so we associate with knowledgeable researchers, and physicians, and other patients who’re educated in this area to offer packages.

And one of the packages that we’re pleased with that occurs yearly, annually, is the PCOS Consciousness Weekend. And this yr, in 2019, it’s arising. We’re doing it in Orlando, and so this yr’s somewhat totally different as a result of we’ve added our inaugural gala referred to as “Rise to The Challenge Gala.” So, that’s occurring in Orlando on September 20th. Our PCOS Symposium, which is where we could have educated specialists and alternatives to satisfy different people who are coping with PCOS, hear different individuals’s tales, and depart with sensible recommendation and steps to vary your life that day and study extra concerning the syndrome and how it impacts you as a person and in addition connect with members within the healthcare area who are educated concerning the syndrome. So, it’s a very, really exciting occasion, the place there are often a whole lot of principally patients and supporters of sufferers and in addition, healthcare providers.

After which the third occasion of that weekend is the PCOS Problem 5K. Every year, this is a chance for tons of of patients and supporters to get collectively and not solely study extra concerning the syndrome than they ever had before, but in addition meet different people who find themselves dealing with the same factor, and discover ways to become involved and the way to advocate for your self and be a part of the PCOS consciousness movement. So, it’s really thrilling. We’re actually excited concerning the gala, where we’ll be highlighting members of the group who are actually performing some nice issues to assist individuals in the PCOS group. So, this weekend shall be a chance for individuals to study extra about PCOS Challenge, study extra about PCOS, and study extra about how one can become involved.

Amy:                                    It really is an excellent event. I feel this can be my fourth yr attending and I can inform you that it is such … Properly, I all the time come again simply on a excessive as a result of it’s such a constructive setting. There’s a lot good power, and it’s so nice to be a part of this kind of sisterhood, of types?

Sasha Ottey:                      Yeah.

Amy:                                    And we actually come collectively and share our experiences and we study from one another and help one another. And I feel, yeah, there’s loads of friendships which might be shaped at this occasion, too. As a result of, again, you had mentioned originally of the podcast that sense of feeling that you simply’re on their lonesome on this, especially should you don’t have lots of help with family and friends in this journey. Come to the event and are available to the weekend. There’s a lot camaraderie, particularly on the race, and I’m very excited concerning the gala. I can’t wait to go gown buying. But the race or the enjoyable run/stroll, it’s going to be on the similar place it was final yr?

Sasha Ottey:                      Yes, it’s lovely Baldwin Park. Oh, my gosh, it’s so beautiful.

Amy:                                    Yeah, right round this actually pretty lake and there’s simply a lot conversation happening, especially should you walk like me and there’s so much help. In the event you’re in search of a place the place you possibly can really feel related with different ladies with PCOS, you need to come to the PCOS Problem weekend.

Sasha Ottey:                      Thank you, Amy. And we’re also doing … We now have numerous events this yr. We’ve 12 complete, so your listeners can go to pcoschallenge.org to seek out out extra concerning the places and what we’ve got happening. So, we’re doing the weekend in September, but we’re additionally doing other 5K events around the country. We’re going to be in Detroit and Philadelphia in July. In August we’ll be in Long Seashore, California and in September we’ll be in Atlanta, Orlando and so all year long, all the best way to December, we may have occasions and opportunities for sufferers and suppliers and supporters of the PCOS group to return out and actually rejoice that there’s opportunities to return together and improve awareness, which is a lot wanted. So, it’s just an empowering constructive event, as a result of that’s what PCOS Problem is about.

There’s so many challenges that we cope with, with this syndrome, however right here is an opportunity and a singular opportunity that isn’t all the time afforded to us as PCOS patients, but a singular opportunity to return collectively to help one another and in addition to boost funds for PCOS Problem, which is nonprofit, that’s actually devoted to the long-term constructive development for the PCOS patient.

Amy:                                    Nicely, I do know once I would promote the events, I know it was in Atlanta several years ago and now in Orlando, individuals would typically say, “Well, can’t you bring something closer to me?” And you’ve carried out it this yr with all of those different venues, so I actually encourage ladies to reap the benefits of those other city-held occasions. And there’s something I just needed to convey up, too, is that you simply’ve made it really reasonably priced. It’s not a lot of money to truly attend the symposium weekend, and I know you could have a very affordable room block fee, as nicely?

Sasha Ottey:                      Yeah, you understand, one of many things that’s actually, really necessary to me, personally, is that all the things we do is accessible because that’s one less challenge for the public, for sufferers. It appears as though most of all the things that we have now to do to handle PCOS or attempt to reside a more healthy life with PCOS is admittedly, really financially taxing and so one of many issues … Despite the fact that we encourage individuals to return from everywhere in the country, the PCOS Awareness Weekend is usually really reasonably priced for patients. We closely rely upon sponsorship to cowl nearly all of the price of placing on the event and have the charge to cowl the meals costs for patients or attendees. So, it’s actually essential to me and to our organization that we’ve an occasion the place individuals from all walks of life and, a few of the individuals who want the knowledge probably the most, is able to access the knowledge and be part of the occasion.

Amy:                                    So, once more, I simply actually need to encourage ladies to look and listeners to take a look at this event as really an act of self-care and for those who comply with PCOS Diva, then you understand how necessary self-care is to managing PCOS and this totally is a place where you possibly can achieve some worthwhile information and really maintain yourself when you’re doing it and have a bit of getaway break. I know that’s one thing that I’m really wanting forward to.

Sasha Ottey:                      Sure, I’m actually excited about a few of the places. I do know we’ll get to be in some sunny areas, areas surrounded by water, areas with actually phenomenal monuments. And even in our nation’s capital, we’ll have a walk in October, so we’re really, actually excited to be able to get individuals to run or to be on the sea of teal elevating awareness for PCOS across the country in areas the place we’ve by no means executed this earlier than. So, it’s really, really exciting.

Amy:                                    Properly, talking of our nation’s capital, the PCOS Problem has been doing loads of work within the nation’s capital, making an attempt to make PCOS more of a nationally-recognized well being condition and I hoped that you might converse to us about some of your efforts?

Sasha Ottey:                      Yeah, I feel most of us know that we might have plenty of challenges with even individuals round us understanding what PCOS is. There’s a huge awareness difficulty and in my work as government director of PCOS Challenge and working with researchers and clinicians, we observed that one of many largest reasons for the lack of knowledge was the shortage of research dollars that gets allotted to PCOS analysis and the way does research get funded. So, the National Institutes of Well being, NIH, is the most important funder of biomedical analysis in your complete world. However, PCOS Challenge and other PCOS world-renowned researchers, we found that PCOS research gets less than zero.1% of the NIH price range. And for a condition, that’s probably the most widespread human issues. So, there’s this disparity there relating to how PCOS research gets funded, how much PCOS analysis gets funded, what sort of PCOS analysis gets funded. All of that interprets to how a lot information there’s, how docs get educated, and what medical assets there are.

So, the shortage of research has translated to the lack of know-how of PCOS in most of the people and within the medical group. And PCOS hasn’t even been listed on any of the national calendars. So, they’re awareness month for diabetes, for cancer, for coronary heart disease, but PCOS was by no means listed on any awareness calendar for the USA. And so we all know PCOS Awareness Month had been celebrated in September, but it wasn’t formally recognized by our government and PCOS Challenge decided to vary this. So, we headed to Capitol Hill and reached out to get a representative to sponsor a decision. We worked with them on writing a decision to acknowledge the seriousness of PCOS and September as PCOS Consciousness month.

So, this is really essential because a lot of the circumstances which have consciousness campaigns happening, we know all about breast cancer and most cancers generally, simply because they are prioritized by our authorities, that’s one of the reasons and with PCOS and the way pervasive it’s, we feel, we know that PCOS needs to be a much bigger priority in our government and with analysis. So, we obtained a sponsor, representative David Scott, to introduce the resolution in 2017 and 2018 and now 2019 and in addition senators, David Purdue and Elizabeth Warren did the same, and it unanimously passed in the Senate and that was large. Why are we still doing it? We type of want to do that a number of occasions and continue doing it to keep on their radar, and in addition we’re doing other things when it comes to having our representatives reach out to the CDC and the NIH to ask them about what they’re doing with PCOS.

So, it’s going to be a long-term effort, but the extra we construct this area of advocates and awareness on Capitol Hill, the extra you’ll see a higher transition into more entry to analysis funding and dollars for PCOS and in addition, one of many issues that we’re aiming to do is to get the Centers for Illness Management and Prevention to do an consciousness campaign for PCOS. So, that was a mouthful, but there’s so much happening when it comes to building this awareness on the Hill. We additionally built a PCOS Caucus, which is an recognized group of advocates on the Hill who’re your representatives on the Hill, so the more they’re conscious of how PCOS impacts you, as their constituents, the extra prepared they are to teach their friends on the Hill and really struggle for us and struggle for higher consciousness, schooling and, finally, we hope, a remedy.

Amy:                                    Properly, I had the privilege of with the ability to go to the 2018 Advocacy Day and let me inform you, that was probably the most empowering experiences I’ve had round simply sort of advocating for PCOS and talking with each of my senators and my consultant and other people have been very open and receptive to studying more about PCOS they usually have been very supportive and it was just such a … I have never been within the recesses of the Capitol and received to experience the senate subway practice. It was just really an exciting experience, and I encourage listeners, if this is one thing that you simply’re considering, to completely attend one of the annual Advocacy Days and, Sasha, do you’ve gotten a sense of when will probably be for 2020?

Sasha Ottey:                      It’ll possible be in March 2020. However, every little thing I discuss right now, you’ll be able to go to pcoschallenge.org. You’ll be able to go to the contact type and attain out to us there and even be a part of a ready listing for us to announce to you when we now have a few of these occasions arising. So, Amy, I feel that is one thing that folks in most of the people who, most of us don’t know the best way to reach out to our representatives and senators and have never had the chance to succeed in out with a cause that’s so essential and close to and pricey to our hearts. Earlier than PCOS Challenge started doing our work, PCOS has by no means been talked about in any major piece of laws on Capitol Hill, so if our members of Congress doesn’t know that this exists, then it should proceed to be ignored. There’ll proceed to be a scarcity of assets. We’ll continue to go years and even many years with out getting a analysis or remedy. So, it’s actually essential.

And I feel, clearly, clearly, from what I’ve witnessed at our Advocacy Days on the Hill or our briefings on the Hill is that sufferers are really fed up about not being heard, not being listened to, not being believed. And that is the opportunity to proactively take a stand that this is unacceptable for a condition that’s as pervasive and impacts so many features of our lives to go ignored. So, it’s really an empowering event to know that you simply’re there taking a stand and affecting change, which is what we’re all doing, so I’m actually pleased with individuals like you. And this yr we had more researchers and different physicians and nurses and registered dietitians and health … Just a lot of people who have been each patients and healthcare suppliers or patients and their partners.

It’s really, really great to see the growth of this motion and simply people who find themselves impacted by PCOS at the moment are beginning to know that they need to take this chance and can work alongside PCOS Problem, help PCOS Challenge, as a result of we’re making an attempt to finally, what we all want, is for every of us to be listened to and for us to have the appropriate assets to reside happier and more healthy lives, and I feel all of us deserve that.

Amy:                                    Oh, we definitely do. I needed to call consideration to, for those that may’t physically journey to D.C. for Advocacy Day, you could have assets, templates, on that Advocacy page, which we’ll hyperlink to in the present notes, the place you possibly can easily and shortly write a letter to your legislators as properly so you can do it just from the consolation of your personal house.

Sasha Ottey:                      Yeah, completely and thanks for sharing that, Amy. In fact, most of that is occurring in the course of the week when most individuals are at work, however this is additionally when our legislators are on the Hill. So, in fact, many individuals gained’t be capable of be there in individual, however you possibly can still share your voice. You possibly can still take part by writing to your legislators and we hand-deliver or e mail them in your behalf to your legislators. So, I feel that that is really type of a pivotal time in the PCOS group, where we’re now accessing opportunities to make use of our voices, the place 20 or 30 years in the past, this was non-existent. And I’ve to reiterate how proud I’m for … This motion occurred relatively shortly, so it’s inside the final one to 2 years that this has happened and individuals are embracing this opportunity because most of us perceive how necessary this is.

Amy:                                    Properly, I offer you so many kudos. Once more, you’re one of many women that I like probably the most for all of the work that you simply’ve accomplished. Earlier than we go, there’s two other things I needed you to the touch on, so I have to offer a shout out to the PCOS Challenge PCOS Diva Confidence Grants. Grants are something that’s necessary to PCOS Problem and I used to be wondering for those who might speak a bit of bit about what they are and the way they will help ladies with PCOS?

Sasha Ottey:                      Yeah, Amy, and that is one thing I speak about wherever I’m going because that is such a huge factor for our group. That is one thing that I’ve the PCOS Challenge with the plan to provide individuals access to providers that simply aren’t obtainable, what insurance coverage doesn’t cover or simply insurance coverage is both missing or not enough. So, one of many issues that Amy once we have been talking a couple of years ago, perhaps at this point perhaps four years ago, three or four years ago, if you reached out to us since you needed to offer again to the group, greater than you already have with PCOS Diva, but you’re this actually sort and considerate soul, who needs to maintain doing extra to help the group, so thanks for that. I all the time converse favorably of you and share how good your heart is.

So, this was the chance. We recognized areas the place, from my private experience and for other individuals’s experiences the place there’s simply such a scarcity of help and choices for individuals and a type of was hair and skin issues related to PCOS, primarily hirsutism, pimples, hair loss. These are things which might be either not coated by insurance coverage, the remedies for them aren’t, or even when you’ve got insurance coverage coverage, there’s often a struggle to get it coated as a result of this stuff are thought-about by insurance corporations to be purely cosmetic or elective. Properly, Amy, we will tell them that for someone who’s body image or vanity or confidence degree is impacted by having excess facial hair or pimples or hair loss, this is not elective. This isn’t just cosmetic. This can be a medical situation that needs to be addressed and coated by insurance.

We hear tales from girls and women on a regular basis, who have hirsutism, the excess facial hair, who avoid interacting with other individuals, who have misplaced jobs, who have misplaced relationships because of how they really feel about themselves, how they feel their body is betraying them. They usually feel so alone and so unsupported, by not getting access to things like electrolysis, laser hair removing and pimples remedies. So, the arrogance grant, the PCOS Diva/PCOS Problem Confidence Grant was shaped to assist individuals like these, to provide $500 to help with these remedies, whether or not it’s electrolysis, laser hair removing, pimples remedies and even hair pieces to assist cowl hair loss or aid you really feel more confident.

This grant has really, really reworked quite a few lives, so far, and we’ll meet through the PCOS Consciousness Weekend, we’ll meet one of the winners of the Confidence Grant and she is going to share how it’s helped her life and the way she’s now reworked her life from being suicidal. She was suicidal and actually felt that her look would hold her again for the remainder of her life. So, I’m really, actually completely satisfied to report that we’ve been reworking lives and will continue to do so, because of your help, Amy.

Amy:                                    That has obtained me emotional. You’re so welcome and, really, it’s you and PCOS Divas which might be supporting it, too, because a portion of proceeds from any of my merchandise or program gross sales go to the PCOS Confidence Grant. So, thanks, everyone listening, that when you have supported PCOS Divas because, in flip, you’re supporting the Confidence Grant.

Sasha Ottey:                      Yeah, I can’t wait for you to meet no less than a number of the other lives that you simply’ve touched, Amy, through the PCOS Consciousness Weekend. I’m positive it’s already an emotional weekend, but that I actually sit up for.

Amy:                                    Oh, I better deliver my tissues.

Sasha Ottey:                      Yeah, but there’s additionally … We shall be saying very soon another grant that will probably be helping individuals with one of many largest, largest things that influence their lives as sufferers with PCOS is infertility, so I can’t wait to actually announce later in the upcoming months the newest alternatives to assist the group.

Amy:                                    That’s really thrilling. Properly, finally, I just needed to say I know that the PCOS Problem can’t do all the issues that you simply do without the assistance of volunteers and if what we’ve been speaking about resonates with you and you’d wish to become involved, perhaps you might tell listeners what are a few of the opportunities to become involved and volunteer for the PCOS Challenge?

Sasha Ottey:                      Yes, and I really need to shout out our volunteers, because none of our events, none of our packages, nothing is feasible with out our volunteers. PCOS Challenge is run by volunteer energy and we’re so grateful for the people who dedicate their time and power and efforts to our work. So, we’d like volunteers to assist with every of our occasions, so in the event you go to pcoschallenge.org and you may see an inventory of our events, together with the PCOS Consciousness Weekend, we’d like individuals to help with each of these events. So, the best way you’ll be able to enroll as a volunteer, once more, is to go to pcoschallenge.org. Go to the contact type and you may ship us an e-mail and choose the volunteer alternatives. We welcome you. We welcome people who find themselves like-minded and need to assist others locally, while typically serving to themselves. So, we welcome women and men, and teenagers, and people who have been impacted by PCOS and people who just need to help individuals locally reach out to make use of and who would love you help and assist.

Amy:                                    And I’m going to only put out slightly selfish plea for myself as a result of I’m a part of the Affected person Advocacy Board, and I’m heading up the content chair to develop more patient-directed content and so should you like to put in writing, please fill out a type and you may be a part of my staff.

Sasha Ottey:                      I know you’re such a busy lady, as am I, and I can’t emphasize sufficient how much we depend on the help of others within the PCOS group and one thing I know we’ve talked about before, is just how artistic ladies with PCOS are.

Amy:                                    Sure.

Sasha Ottey:                      This group is constructed on so many artistic individuals, artists, writers, performers, it’s unimaginable how much artistic power we have now locally, so if any of you want to lend some of that artistic power to help construct and gasoline our packages and occasions, we really look ahead to connecting with you and we’d like artistic individuals to assist us with the PCOS Challenge Journal. We’d like graphic designers. There’s so many alternatives for you to use your artistic expertise to assist PCOS Challenge locally and if you want to be related and be a part of PCOS Diva’s group, that may be unimaginable and we look ahead to connecting. So, pcoschallenge.org and within the prime navigation, there’s a “contact us” button. Click that and reach out to us there.

Amy:                                    And I just should remind everybody that that’s one of many key tenets and I write about it in my ebook that ladies with PCOS need to get reconnected with that artistic drive, since I feel that it’s so necessary to healing and if anything we talked about resonates with you, yes, please reach out. And Sasha, I just need to thanks, once more, for all that you simply do and I’m so excited concerning the upcoming weekend and the occasions and I can’t wait to see everyone there.

Sasha Ottey:                      Similar, thanks so much, Amy. I look ahead to seeing you in Orlando and connecting again with you soon. Thanks so much, and thanks, everybody, for listening.

Amy:                                    Yes, thank you everybody for listening and I look ahead to being with you again very soon. Bye-bye.