Lyla's Legacy

In this episode of the AllPaths podcast, we sit down with Heather Toland for an honest conversation about loss, resilience, and the complexities of growing a family. Heather shares the heartbreaking story of her firstborn daughter, Lyla, who tragically passed away at just two weeks old after suffering strokes and seizures caused by a rare genetic disorder.After losing Lyla, Heather and her husband found themselves navigating a devastating reality without knowing anyone personally who had been through an infant loss. Her grief therapist suggested exploring podcasts on pregnancy and infant loss as a helpful resource which led Heather to Emma’s Footprints’ podcast, Compassion of a Grieving Mother. She binged numerous episodes, finding comfort, strength, and hope in hearing other women and families share their personal stories of loss and resilience. Realizing that the podcast was produced by a full nonprofit organization, Heather reached out directly to Tracy Daly, the co-founder of Emma’s Footprints, who had established the organization after losing her daughter Emma to stillbirth.When they were ready to try to build their family again, Heather and her husband navigated the process of specialized IVF and genetic probe development, enduring the agony of a chemical pregnancy, a failed transfer, and a miscarriage requiring a D&C. And when they later conceived their son Owen without assistance during a break from treatment, their joy was overshadowed by anxiety over potentially passing on the same genetic disorder and then a high-risk diagnosis of placenta accreta, resulting in Owen's premature delivery at 34 weeks and a life-saving hysterectomy for Heather. Still hoping to further grow their family, Heather opens up about the emotional realities of parenting after loss, navigating toddler questions about a sibling in heaven, and her family's ongoing journey to expand their family through gestational surrogacy.Still connected with Emma’s Footprint’s, Heather credits the organization for restoring hope during some of her darkest moments. She now serves on the Board of Directors, mentors other grieving mothers as a Care Team Mom, organized Boston’s first annual Pregnancy and Infant Loss Remembrance Walk in 2026, and hosts local Loss Mom Meetups across Massachusetts. Although Heather doesn’t know what the future holds for her family, her story beautifully demonstrates how finding a compassionate community can transform profound isolation into collective healing, resilience, and lifelong advocacy for grieving parents.Connect with Emma’s Footprints at https://www.emmasfootprints.com/ and Heather directly through Instagram at @heatherafterloss.Register for the upcoming Loss Mom Meet-Up event on Nov. 15th at Soleo Wellness in Duxbury, MA.And a special thank you to CCRM Fertility of Boston for sponsoring this episode and for their support and commitment to the family-building community.TOPICS COVERED IN THIS EPISODE:Grief support, Bereavement Support, Infant Loss, Newborn Death, Rare Pediatric Genetic Disorders, Boston Children’s Hospital, Maternal Mental Health & Grief Therapy, counseling for pregnancy and infant loss, grief therapist, Overcoming Isolation After Loss, infant loss, grief support resources, Emma’s Footprints, Community Advocacy, Channeling Grief into Purpose, Fertility Treatments, IVF After Loss, In Vitro Fertilization (IVF), Embryo testing, IVF for genetic testing, custom genetic test development, specialized PGT/M probes, Recurrent Loss, chemical pregnancy, failed embryo transfer, miscarriage requiring a D&C, High-Risk Pregnancy, Medical Complications, Spontaneous Pregnancy After Infertility, Signs from Loved Ones, spiritual signs, Placenta Accreta Diagnosis, preemie, NICU, emergency c-section, Pregnancy and Infant Loss Awareness Day (October 15th), emergency hysterectomy, Parenting After Loss, Secondary Family Building, Parenting After Loss (PAL), Talking to Children About Loss, Explaining an older sibling in heaven to toddlers, honoring siblings, Family Traditions of Remembrance, Celebrating angel birthdays, Gestational Surrogacy Journey, Pursuing surrogacy after hysterectomy, gestational carrier’s pregnancy loss, Redefining Family Size, Patient Empowerment, Social Support Advice, Medical Self-Advocacy, How to Support a Grieving Friend or Family Member, CCRM BostonCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

You did the retrieval, waited anxiously for the results, and received the news that your embryo is chromosomally normal and ‘healthy.’ So why didn’t it become a successful pregnancy?This heartbreaking paradox is one of the most confusing hurdles in modern fertility treatment. When patients undergo standard pre-implantation genetic testing (PGT-A), they often assume an embryo labeled "normal" guarantees a healthy pregnancy. Yet, as today’s guest explains, even fully tested euploid embryos fail to result in a live birth 40% to 50% of the time.Jeremy Grushcow, founder and CEO of Juniper Genomics, shares the limitations of standard pre-implantation genetic testing, how Juniper is helping families get deeper genomic clarity, and howPGT-A acts like a quick headcount of chromosomes, confirming whether all 46 "books" are present on the shelf, but it never opens those books to read the genetic text inside. Even with all 46 chromosomes in place, hidden sequence-level "typos" or more technically, reduced viability variants within vital developmental genes, can quietly halt an embryo's growth.Jeremy’s dedication to this field is deeply personal: during his PhD in molecular genetics, his family tragically lost a young relative to a sudden cardiac event caused by an undetected single-gene disorder. That loss illuminated the life-saving importance of identifying hidden risks early and stayed with him through careers in law and population genetics. When a clinician later challenged him on why he would "medicalize" pregnancy, Jeremy was galvanized to act.Embryos can be screened for monogenic conditions through PGT-M, but that requires families knowing that they’re at an increased risk of passing on a specific condition at the start. Through PGT-G testing, Juniper takes the books off the shelf, opens them up, and reads the actual letters across all 3 billion base pairs of DNA to detect reduced viability variants that contribute to unexplained pregnancy loss and implantation failures. And while sequencing embryos through PGT-G is at the core of Juniper Genomics' mission, their work extends well beyond the embryo stage. Recognizing that embryo quality is only one part of the fertility equation, they tackle unexplained transfer failures and pregnancy loss from multiple angles including parental blood testing, RNA transcriptome data, and more so that families, clinicians, and payers can choose confidence over uncertainty at every step.Learn more at https://www.junipergenomics.com/.TOPICS COVERED IN THIS EPISODE:PGT-G, Pre-implantation Genetic Testing for Genomics, PGT-A, Pre-implantation Genetic Testing for Aneuploidy, Whole-Genome Sequencing, Transcriptome / RNA Sequencing, Euploid Embryos, Reduced Viability Variants, Single-Gene Disorders, Genetic "Typos", Carrier Screening, Jeremy Grushcow, Juniper Genomics, Juniper Insight (Parental Blood Panel), Euploid (Meiosis Medication), Evie (Vaginal Microbiome), Stem-Cell-Derived Gametes, In Vitro Fertilization (IVF), Embryo Transfer Failure, Recurrent Implantation Failure (RIF), Paternal Age & Sperm Genetics, Gamete Quality, Sperm Freezing, Surrogacy & Donor Gametes, Removing Patient Self-Blame, IVF Economics & Payer Alignment, Healthcare EfficiencyCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

After enduring four pregnancy losses in just twelve months, the most healing words Macie heard didn’t offer false hope or easy silver linings, they simply acknowledged the brutal truth: "it's not ok, this sucks." In this episode of the AllPaths Podcast, Macie, a 26-year-old Michigan native living in Massachusetts with her husband and their Great Dane, Luna, shares her journey through recurrent pregnancy loss.Macie speaks candidly about the physical and emotional toll of repeated loss, beginning with a first-trimester miscarriage following a high-risk monosomy X screening, moving through subsequent unexplained losses, and navigating a diagnosis of Factor V Leiden that required daily blood thinner injections. She reflects on the loneliness of facing pregnancy loss at a young age, the sting of well-intentioned but dismissive comments like "you're young, you have time," and the pivotal moment an ultrasound technician gave her permission to stop putting on a brave face and acknowledge that her situation simply was unfair and painful.Towards the end of the conversation, Macie offers a vulnerable look at being in the "messy middle" of her family building journey as she is currently pregnant again, exploring the complex mix of anxiety and guarded hope as she reaches the end of the first trimester while managing progesterone support, daily injections, and clear genetic testing. Together with the hosts, she examines the comfort found in specialized perinatal therapy, the power of connecting with peers in the AllPaths "Expecting After" Support Group, and the practical ways loved ones can show up by offering safe, quiet spaces to grieve rather than trying to fix the unfixable. And by speaking candidly from the unresolved middle of her journey rather than waiting for the safety of the other side, Macie reminds us that you don’t need a neatly tied-up ending for your story, your grief, or your guarded hope to matter.🧡 You are not alone: https://allpathsfb.org/support/.TOPICS COVERED IN THIS EPISODE:Pregnancy loss, miscarriage support, recurrent pregnancy loss, pregnancy after miscarriage, infertility support groups, Factor V Leiden pregnancy, blood thinners during pregnancy, progesterone supplementation pregnancy, NIPT testing early pregnancy, genetic counseling prenatal, coping with pregnancy loss, pregnancy anxiety after loss, miscarriage causes testing, early pregnancy bleeding causes, fertility clinic evaluation recurrent loss, Sara Bareilles, the messy middle, pregnancy after loss, Expecting After support group, peer support, support groups, AllPaths Family Building support, emotional support infertility, prenatal blood clotting disorders, how to support someone after miscarriage, how to support someone after pregnancy lossCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

Driven by the stark reality that half of all recurrent pregnancy loss cases go completely unexplained, Recurrent Pregnancy Loss Association (RPLA) co-founder Megan Hanson shares her story and discusses turning patient heartbreak into scientific progress. Megan opens up about her personal path through six consecutive miscarriages, the trauma and anxiety of navigating pregnancy loss, and growing her family, first through gestational surrogacy in 2021 and later through an unexpected spontaneous pregnancy in 2023. She reflects on the dismissive reactions often encountered in healthcare settings after miscarriages and underscores why medical curiosity and emotional support must be prioritized after every loss.Turning her pain into systemic action, Megan explains how she and her husband founded RPLA on the principle that "unexplained is unacceptable," asserting that finding answers requires dedicated research funding and prioritization. She highlights RPLA's key initiatives, including support and resources for anyone navigating recurrent pregnancy loss, an annual research grant funded in partnership with the American Society of Reproductive Medicine (ASRM) and the launch of the RPL Community Registry on the I Am Rare platform. This HIPAA-compliant registry allows anyone aged 18 or older with multiple losses to contribute self-reported health and care navigation data, creating a community-powered data set to help researchers discover root causes, identify and eliminate healthcare barriers, and turn collective lived experiences into meaningful scientific progress. Ultimately, Megan emphasizes how patient-contributed data can give purpose to personal grief while finding answers and improving care for future families.Connect with RPLA at https://rplassociation.org.Join the RPL Community Registry at https://rplassociation.org/rpl-community-registry.TOPICS COVERED IN THIS EPISODE:Pregnancy loss, miscarriage, recurrent pregnancy loss, Recurrent Pregnancy Loss Association (RPLA), Megan Hanson, recurrent miscarriage support, unexplained recurrent pregnancy loss, RPL Community Registry, pregnancy loss research registry, surrogacy, gestational surrogacy, intended parents, IVF with PGT, reproductive immunology and miscarriage, antiphospholipid syndrome miscarriage, pregnancy and infant loss awareness, emotional support after miscarriage, support groups, peer support, support groups for pregnancy loss, fertility advocacy and research, navigating fertility after loss, how to support someone after pregnancy loss, maternal fetal medicine for recurrent loss, pregnancy after loss, parenting after loss, NICU and premature birth after loss, time to live birth after miscarriage, AllPaths Family Building, American Society of Reproductive Medicine (ASRM), research grant funding, community dataset, grief supportCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

How do you hold space for others through infertility, pregnancy, and the postpartum period while quietly navigating your own recurrent pregnancy loss?In this episode of the AllPaths podcast, we sit down with Caitlin Vinter, a perinatal therapist and mother of two, to discuss her personal and professional journey. Caitlin candidly shares her three-and-a-half-year path through recurrent pregnancy loss, enduring five miscarriages alongside multiple rounds of IUI and IVF, a blood clotting disorder, and recurring endometritis infections. She reflects on the emotional strain of navigating unpredictable fertility treatments during the COVID-19 pandemic, the challenges of unexplained loss, and the eventual arrival of her sons following targeted medical interventions and perseverance, all while supporting her clients through their own, often complicated, journeys.Drawing on both her lived experience and her clinical practice specializing in perinatal mental health, Caitlin offers insights into coping with the profound uncertainty and emotional weight of fertility struggles and recurrent loss. Our conversation covers the heavy emotional toll of cumulative and disenfranchised grief, the importance of finding specialized support communities, the reality of partners processing loss differently, and ways to cope with feeling a profound lack of control over your own body, journey, and future. Caitlin shares the mantras and mindsets that helped her throughout her own struggles, including radical acceptance, staying flexible through twists and turns, and allowing space for both joy and grief.Caitlin also offers advice to friends and family who are unsure how to support a friend or family member navigating fertility struggles, pregnancy loss, or other types of reproductive grief. We discuss a few ways to show up for a loved one during the episode, but read Caitlin’s blog post, based on her journal entry written about a year into her own family building struggles, for a deeper dive into how choosing action and acknowledgment over silence can make all the difference when helping loved ones feel seen during their journey.Connect with Caitlin at Era Psychotherapy.Find support and community at AllPaths’ free, virtual Pregnancy Loss Groups.TOPICS COVERED IN THIS EPISODE:Pregnancy loss, miscarriage, recurrent pregnancy loss, IUI, IVF, fertility treatment, infertility, endometritis, pregnancy after loss, mantra, radical acceptance, flexibility, mental health support, mental health provider, therapist, therapy, group support, peer support, AllPaths Family Building, Return to Zero, grief, relationships, perinatal therapist, PMH-C, Postpartum Support International, resilience, reproductive grief, disenfranchised grief, cumulative grief, for family and friendsCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

In this mini-episode of the AllPaths Podcast - regular full-length episodes resuming next Tuesday - host Emily catches up with listeners, expressing gratitude for the success of AllPaths’ recent Footsteps for Family Building Walk, while acknowledging the emotional challenges of Pregnancy and Infant Loss Awareness Month in October.Recognizing that 1 in 4 confirmed pregnancies ends in loss, Emily speaks openly about the lingering, evolving nature of grief and emphasizes how crucial a safe, open space to talk with others is for healing. Finally, Emily shares valuable support offerings from AllPaths, including two free monthly virtual support groups, personalized mental health professional matching and curated resources to ensure no one has to grieve in isolation.AllPaths Loss Support & Resources:Free Virtual Pregnancy Loss Support Groups: Two monthly groups, one tailored for individuals who are not yet parenting and another open to anyone who has experienced loss, including those with living children, providing support to those who have experienced miscarriage, ectopic pregnancy, chemical pregnancy, TFMR, and/or recurrent pregnancy loss.Mental Health Provider Directory & Matching: Access to specialized mental health professionals focused on family building challenges through the AllPaths’ Professional Directory. Email [email protected] for customized provider matching based on insurance, location, virtual preferences, and more.Resource Library: Discover additional podcast episodes, guidance for loved ones, and support tools in the Loss section of the AllPaths’ online Resource Library.Wave of Light: As part of PAIL Month, International Pregnancy and Infant Loss Remembrance Day is observed every October 15th, culminating with Wave of Light around the world, created by families lighting candles to honor the little ones held in their hearts from 7-8p local time. AllPaths participates in the Wave of Light each year by lighting our Remembrance Lantern and we invite you to join us at https://allpathsfb.org/wave-of-light/.Don't miss our next episode!Be sure to follow or subscribe to the AllPaths Podcast on your favorite app so you are notified as soon as regular, full-length episodes resume next Tuesday. If this mini-episode brought you comfort, please take a moment to leave a rating or review, and share it so anyone struggling to grow their family can join the conversation.TOPICS COVERED IN THIS EPISODE:AllPaths Family Building, community, Footsteps for Family Building Walk, Pregnancy and Infant Loss Awareness Month, PAIL, October, International Pregnancy and Infant Loss Remembrance Day, Wave of Light, peer support, support groups, pregnancy loss, miscarriage, chemical pregnancy, TFMR, ectopic pregnancy, recurrent pregnancy loss, primary pregnancy loss, Pregnancy and Infant, grief, loss support, grief support, supporting a friend or family memberCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

In this episode of the podcast, AllPaths Executive Director Lauren sits down with volunteer support group leaders Ashley, Kristen, and Jillian to discuss their personal family building journeys and talk about the power of peer support. Each guest shares the unique path that led them to this community: Kristen details her experience navigating secondary infertility, severe diminished ovarian reserve, and a successful "kitchen sink" IVF protocol; Jillian reflects on enduring back-to-back pregnancy losses and a failed IVF transfer before ultimately being able to successfully carry to term; and Ashley opens up about her struggle with endometriosis, IVF challenges, and her rewarding path to parenthood through foster care adoption. Together, they highlight how community support creates a vital safety net for people navigating complicated, often isolating, fertility and family building journeys .The conversation explores what makes AllPaths' 20+ free virtual monthly support groups such a compassionate, low-pressure resource for anyone navigating fertility treatments, loss, adoption, or any other family building path. The leaders unpack the dynamics of group sessions, where attendees are free to simply listen or share at their own pace, give advice only when requested, and connect through mutual understanding and levity. They also offer practical wisdom on advocating for oneself in medical settings, prioritizing mental health therapy, and how friends and family can thoughtfully show up for loved ones with simple check-ins rather than unsolicited advice. No matter what twists and turns you encounter on your journey, this episode provides a comforting reminder that no one has to walk alone.🔸Find your people in one of AllPaths' free, virtual peer support groups today. TOPICS COVERED IN THIS EPISODE:Fertility treatment, IVF, pregnancy loss, recurrent pregnancy loss, adoption, adoption through foster-care, peer support groups, volunteer, nonprofit, peer leaders, fertility support groups, IVF support group, peer support infertility, miscarriage support group, pregnancy loss support, infertility, secondary infertility support, trying for another, diminished ovarian reserve information, IVF success stories, PGT testing, adoption support group, foster care adoption support, postpartum anxiety after infertility, virtual peer support groups fertility, AllPaths Family Building, how to support someone with infertility, fertility therapist resources, coping with infertility and loss, navigating IVF journeys, family building resources nonprofitCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

In today’s episode, we’re delighted to introduce Boston-based reproductive endocrinologist at Brigham and Women's Hospital at Mass General Brigham and new member of the Board of Directors for AllPaths Family Building Dr. Zachary Walker to the AllPaths community. Dr. Walker reflects on his career trajectory, from discovering his passion for reproductive endocrinology and infertility (REI) during his residency in Birmingham, Alabama, to completing his fellowship and joining the faculty in Boston. Dr. Walker is particularly passionate about the issue of racial disparities in reproductive healthcare and the significant gaps in access and outcomes between communities. Our discussion covers the discrepancies in standard semen analysis metrics, lower IVF success rates among Black and Hispanic patients, and the underutilization of fertility preservation among minority groups, with Dr. Walker noting that these inequities persist even after controlling for factors like insurance coverage and proximity to care. To help address these clinical uncertainties, Dr. Walker highlights his current research at Brigham, including studying the impact of fibroid surgeries on IVF outcomes and a novel investigation into sperm molecular structures to better diagnose male factor infertility beyond standard semen analysis.Looking toward the future of fertility care, Dr. Walker shares about his recent launch of a dedicated transgender fertility preservation clinic at Brigham and Women's Hospital, in collaboration with Fenway Health and Boston Children's Hospital. After learning from the community the significant hurdles transgender individuals can face during their family building experiences, Dr. Walker is determined to streamline this process so patients wouldn't have to "run a marathon" just to find accessible care and specialized support.Other projects that Dr. Walker is working on include the integration of artificial intelligence (AI) in IVF workflows and advocacy for underutilized integrative resources like pelvic floor physical therapy for conditions such as endometriosis. Ultimately, Dr. Walker encourages anyone embarking on a family-building journey to build a reliable support network and find a care team that will listen and empower them to navigate complex fertility decisions with clarity and trust. Connect with Dr. Walker on Instagram @zachwalker.md.TOPICS COVERED IN THIS EPISODE:Dr. Zachary Walker, fertility care, reproductive endocrinologist, Brigham and Women’s Hospital, Mass General Brigham, AllPaths Family Building Board of Directors, nonprofit Board of Directors, healthcare disparities, IVF racial disparities, infertility racial disparities, male factor infertility, semen analysis DNA fragmentation, sperm centriole testing, fibroids and fertility myomectomy, intramural fibroid fertility treatment, egg freezing fertility preservation, transgender fertility preservation, LGBTQ fertility care, LGBTQ+ fertility care, transgender fertility preservation, transgender fertility preservation clinic, Fenway Health, Boston Children’s Hospital, pelvic floor physical therapy for fertility, AI embryo selection IVF, PGT embryo genetic testing, endometriosis diagnosis and treatment, how to support someone with infertility, IVF success rates and access to care, CONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

In this milestone 100th episode of the AllPaths podcast, hosts Emily and Lauren welcome Judy Carr, the first mother through IVF in the United States. Judy shares the story of her pioneering path to parenthood in the 1980s, which began with three ectopic pregnancies resulting in the loss of her fallopian tubes. After receiving a pamphlet about a new clinic attempting to help people with fertility problems from her OB-GYN, Judy and her husband traveled to Virginia to consult with Dr. Howard Jones and Dr. Georgiana Jones. What followed that initial consult was a pioneering, highly personalized treatment plan that included the first hormonal stimulation protocol for fertility patients. And while some injections and blood draws could be done in Judy’s home state of Massachusetts, the bulk of her treatment had to be done at Drs. Jones’s clinic in Virginia because IVF was banned in MA at the time as "fetal experimentation." Judy’s first cycle resulted in two eggs, but only one was viable. That single egg was fertilized and transferred, coincidentally on Judy's birthday. After remaining at the clinic for a few days of monitoring, she was sent home with Dr. Georgiana Jones's memorable advice: "go home and don't you get your period." Thankfully she didn’t and that egg became America’s first IVF baby.Judy reflects on the intense historical interest surrounding her daughter's birth, from the secretive hospital plans dubbed "Operation Santa Claus" to the press conference held when Elizabeth was just three days old. She discusses the life-long bond she had with Drs. Jones, a follow-up study that debunked myths about IVF children's intelligence, and how a libel lawsuit against a newspaper resulted in funds to build a new clinic. Comparing early IVF practices to modern reproductive medicine, Judy highlights game-changing developments like embryo freezing, while cautioning against the loss of personalized care and doctor-patient relationships that can sometimes occur in today's protocol-driven clinics.Offering advice for individuals currently navigating fertility journeys, Judy highlights the emotional resilience required for family building, the importance of community support, and the ongoing need for insurance reform and public advocacy, emphasizing that accessible, compassionate care is essential for anyone who is trying to build the family of their dreams.TOPICS COVERED IN THIS EPISODE:Infertility, fertility treatment, fertility care, Judy Carr, America’s first IVF mom, IVF mom, Judy Carr interview, Elizabeth Carr, first IVF baby in the United States, history of IVF in the United States, early IVF pioneers Drs. Howard and Georgiana Jones, access to care, legal and political barriers to fertility treatment in the 1980s, Operation Santa Claus, IVF success stories, IVF pregnancy experience, infertility support and advocacy, family building after infertility, ectopic pregnancy and fertility, IVF emotional support and mental health, embryo freezing and egg freezing, advances in reproductive technology, IVF insurance and coverage, IVF patient-centered care, IVF stigma and public perception, AllPaths podcast 100th episode, early US vs. UK IVF protocols, how IVF works hormone protocols Pergonal, IVF ethical and legal history, infertility resources and peer support, tips for preparing for IVF, doctor-patient relationshipCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!

When Sasha Ottey was diagnosed with Polycystic Ovary Syndrome (recently renamed PMOS, or Polyendocrine Metabolic Ovarian Syndrome) in 2008, her doctor handed her a brief pamphlet and told her not to worry about her irregular cycles, just to “come back when she wanted to get pregnant.” Feeling that her concerns weren’t being taken seriously, Sasha began researching and soon discovered that she was one of millions around the world with PCOS/PMOS, a diagnosis that wasn’t even listed on the National Institute of Health's list of diseases and conditions. Refusing to accept the status quo, Sasha went on to found PCOS Challenge: The National Polycystic Ovary Syndrome Association, building a powerhouse of global support and legislative advocacy for the community.Despite dedicating her life to supporting others through their diagnoses and the lifelong impacts of the condition, Sasha found her own family building journey to be a lonely one when she decided to try to grow her family in her late 30s. She opens up about the vulnerability of undergoing a major myomectomy to remove 10 fibroids in 2020, followed by an aggressive IVF protocol. Given just a 20% chance of success, Sasha beat the odds on her first attempt and is now the mother of a thriving four-year-old girl.Through it all, PCOS Challenge has made enormous strides over the years, from successfully lobbying the NIH to list the condition to getting September unanimously designated as PCOS Awareness Month, which helped increase federal research funding by nearly 50%. Sasha also provides a candid look at the controversial renaming of the condition to PMOS and previews the upcoming PCOS/PMOS Awareness Symposium, taking place in Boston on September 19th. This full-day program, co-hosted by Mass General Brigham, brings together patients, supporters, healthcare professionals, researchers, leading PCOS/PMOS experts, and patient advocates for education and dialogue focused on improving care, treatment, research, and access. This year’s Symposium features specialized patient tracks including Spanish-language sessions and an adolescent-led policy lab designed to empower the next generation to use their voices and drive real change.To connect with PCOS Challenge, visit https://pcoschallenge.org/ and register for the upcoming Symposium at https://pcoschallenge.org/symposium/boston/.TOPICS COVERED IN THIS EPISODE:PCOS, Polycystic Ovary Syndrome, PMOS, Polyendocrine Metabolic Ovarian Syndrome, preventative health care, reproductive health care, fibroids, uterine fibroids, myomectomy, IVF, maternal near miss, postpartum depression, mental health, body image, depression, anxiety, PCOS Challenge, Sasha Ottey, menstrual health, insulin resistance, metabolic issues, pre-diabetes, diabetes, cardiovascular disease, endometrial cancer, cancer risk, PCOS Advocacy, patient advocacy, patient-centered research, research funding, GLP-1s, advocacy, PCOS Awareness Month, PMOS Awareness Month, PCOS/PMOS Awareness SymposiumCONNECT WITH ALLPATHS FAMILY BUILDING: https://allpathsfb.orgFollow us on social media @allpathsfbWant to share your story or ask a question? Get in touch at [email protected]!