Episode 59 Transcript

Ep 59 Transcript | Advocacy Groups: Highlighting Important Organizations

INTRODUCTION
Hello and welcome to Fertility Cafe! I’m your host Eloise Drane. Today’s episode is going to be a bit different than usual. I wanted to spend some time highlighting several organizations within the fertility community that are doing amazing work day in and day out. Many of these groups were born out of their founders’ personal fertility journey – the trials and tribulations they faced led them to devote countless hours and, often unpaid labor, to help others who find themselves in a similar situation.

My goal is to bring awareness to the incredible work that is being done – several of these are lesser known in the greater fertility community, but there are a few big names you might recognize. My hope is that perhaps you will discover help and support that you didn’t know was out there. Or you may feel called to offer support to a particular group, whether that be a financial gift or something simple like a follow and share on social media.

Alright, let’s dive in!

Fertility Within Reach
https://www.fertilitywithinreach.org/
The first group I’d like to highlight is Fertility Within Reach.

It’s no big secret that fertility care in the United States is expensive, and on top of that, the healthcare system is exceedingly difficult to navigate. The costs and confusing bureaucracy can keep many intended parents from moving forward on their plans to start a family, and to me and many others, this feels like a moral failing on the part of our society. Fertility Within Reach is a national non-profit that’s actively trying to do something about this problem.

Officially formed in 2010 and they approach the problem from several different angles: education, advocacy, support, and guidance for patients, medical professionals, employers, policymakers, and insurers.

To sum up their work in the most simplistic way: they are fighting to get people in the United States better access to fertility care. Make fertility care less expensive, more accessible, universally offered as a benefit by employers, and understood as a medical necessity by both clinicians and insurers.

They offer education and financial assistance for patients facing fertility treatments. They produce resources and content designed to help people better understand the struggles they are facing – how do you talk to your HR person about fertility benefits? What’s the right phrasing to use with your insurance company, that golden nugget that might unlock your next level of possibility?

Their website contains multiple guides for how patients can communicate with clinicians, insurance providers, employers, and legislators. It provides actionable tips for lobbying state and federal government to do more for fertility care access. And it offers suggestions for approaching your employer with an evidence-based case for offering or expanding fertility care benefits. The advice they give is all based in facts and documented evidence, so you can make the best case you possibly can.

Fertility Within Reach also provides patients with several more general grants and discount programs for intended parents. They connect patients with grants to help with the cost of infertility treatments, adoption, fertility medications, and more.

If you’d like to learn more about Fertility Within Reach and the important work they are doing, visit fertilitywithinreach.org. You can find the link in our show notes.

Tinina Q. Cade Foundation
Another group that provides advocacy, education, support, and financial assistance to people struggling with infertility.

The Tininia Q. Cade Foundation, known most commonly as the Cade Foundation, is a nonprofit that helps provide education and financial support to people who are battling infertility. It was started in 2005 after the founders, Drs Jason and Camille Hammond, completed their own 5-year-long fertility journey. They named the organization after their mother, Dr. Tinina Cade, who served as the couple’s surrogate, delivering triplets at age 55.

The foundation has two major purposes. First, they provide education and free resources about all of the different pathways to parenthood, from adoption to surrogacy and everything in between. They also recognize the enormous costs involved with any type of fertility treatment or alternative path to parenthood, and so they are focused on providing and connecting people with financial assistance. The Cade Foundation itself offers grants to help with the cost of fertility treatments or adoption, and to date has helped over 120 families with financial support. Their mission is simple: helping families and overcoming fertility.

If you’d like to learn more about Cade Foundation and when they will be opening up their application for grants, visit www.cadefoundation.org.

Our Miracle Child
https://ourmiraclechild.com/
The next group I’d like to highlight is the Latoya and Joe Dawkins Miracle Child Foundation. This nonprofit is committed to helping people with the financial side of infertility, offering grants to couples who don’t have insurance or the financial means to pay for treatments themselves. In addition to offering their own series of grants, the foundation also acts as a bridge between people seeking helping with fertility and others who can help them, connecting them with other financial assistance programs, peer support and counseling.

Latoya Dawkins started the foundation after experiencing an infertility journey for more than a decade. She and her husband Joe fought through countless tests, treatments, surgeries, and diagnoses, experiencing financial and emotional stress along the way. Their last IVF cycle was in 2019, and it unfortunately did not result in a pregnancy. When her husband Joe passed in May of 2020, she took the heartbreaking but also inspiring lessons they learned and established the Miracle Child Foundation to help others who find themselves on the same path.

Today, the foundation exists to help patients both through tangible support and counseling, but also through advocacy with policymakers and change agents.

You can learn more about the good work Latoya and her foundation are doing at ourmiraclechild.com.

The White Dress Project
This next group is dedicated to a particular reproductive disorder. The White Dress Project is a non-profit that helps people who suffer from uterine fibroids. Their mission statement reads: The mission of The White Dress Project (TWDP) is to raise global awareness about the uterine fibroid (UF) epidemic through education, research, community, and advocacy. We are dedicated to this mission, by advocating for research funding, highlighting reproductive health inequities, educating many on fibroids and their treatment options, and empowering a community who will advocate for their best health choices and no longer suffer in silence with this chronic illness.

If you don’t have any personal experience with uterine fibroids, you may be wondering, why White Dress project? The name was chosen by the women founders of the group because many women who suffer from fibroids avoid wearing white due to the heavy bleeding they experience. The organization holds the white dress as a symbol of hope and strength for those who suffer, and they view it as a reminder that we will find a cure one day.

The White Dress Project works to bring this often ignored women’s health problem to the forefront. And it is a huge problem when you look at the statistics. 80% of Black women and 70% of white women are diagnosed with fibroids by the age of 50. And over 171 million people suffer from the problem around the globe.

Since their founding in 2014, they have offered support and a platform for sharing stories to over 120,000 women. They successfully lobbied Congress and local legislative bodies around the country to recognize July as the official Fibroid Awareness Month, opening up the conversation on the topic in a brand new way.

The White Dress Project’s Uterine Fibroid Toolkit is one of their most important and comprehensive contributions to the conversation. This Patient Empowerment Guide lays on easy-to-understand information about gynecological health, uterine fibroid diagnosis and treatment options, and advice for how to communicate with health care providers. This guide fills in a huge gap in knowledge about the condition.

The work this group does is so important because too often – and I have seen this myself time and again – women’s complaints get brushed aside in the doctor’s office.

In addition to their patient education efforts, the White Dress Project engages with medical professionals in their Dialogue with the Doctors series. This video series connects patients with doctors so they can share their stories, ask questions, and generally break through the “walls of silence” around fibroids. You can view this important series on their Youtube channel.

The White Dress Project is steadfast in their belief that you don’t have to suffer in silence – and they are doing a wonderful job of crushing the stigma that surrounds women’s health issues like this one.

If you’d like to learn more about the White Dress Project visit thewhitedressproject.org.

PCOS Challenge
Another condition-specific organization is PCOS Challenge: The National Polycystic Ovary Syndrome Association. This non-profit is focused on providing patient support for women and girls with PCOS, and on global advocacy around the issue.

PCOS is a condition that is often overlooked, misdiagnosed, or misunderstood. In case you are unfamiliar with it, PCOS is a hormonal, metabolic, and reproductive disorder that as many as 15% of women experience. Some of the symptoms include irregular periods, excess male hormone levels that cause things like excess facial and body hair, acne, and even male-pattern baldness. It causes the ovaries to become enlarged and produce follicles that surround the eggs, keeping the ovaries from releasing eggs regularly.

It’s one of the leading causes of infertility and can also lead to severe health effects like type 2 diabetes, cardiovascular disease, liver inflammation, depression, and endometrial cancer. It’s a very serious condition that can have life-altering effects, and yet more than half of women who have PCOS are unaware and undiagnosed.

PCOS Challenge exists to change that. According to the organization, it’s not uncommon for a woman to go several years and up to seven doctors before they get a proper diagnosis and treatment. Much of this is due to the severe lack of funding to research and educate both medical professionals and patients.

The group uses their resources to spread the word about PCOS through tv and radio programming, support groups both on and offline, grants for women who struggle with hair and skin issues due to PCOS, funding for research and education, and more.

You can learn more about how to get involved with and support this group at pcoschallege.org

Empower Donation
EM*Power is an education company dedicated to increasing awareness, empowering choice and fostering understanding for everyone involved in embryo donation. It is led by a team with both personal and professional experience with embryo donation. EM*Power is an inclusive organization and believe that all people – regardless of gender, sexual identity, marital status, or religious beliefs – have a right to pursue parenthood.

They are committed to supporting clinics in integrating the rapidly changing field of genetics and new technologies into their embryo donation practices, while fostering healthy relationships and decreasing fears to normalize this unique family building option.

EM*Power offers education, matching and various services for embryo donation. Visit empowerdonation.com for more information.

The next few groups I plan to highlight are focused on helping women of color feel empowered and educated about their own reproductive health, and they are some of the key voices advocating for legislative and policy change in America.

Endo Black
Another condition-specific group is Endo Black, a black-women-led organization that exists to advocate for and support African American women and women of color who experience endometriosis. Their goals include fostering a supportive, safe atmosphere where women with endometriosis can stop feeling alone in their pain; they aim to educate the community on women’s reproductive health, and they examine what kinds of laws, regulations, and policies need to change to help women with endometriosis.

This organization was founded specifically for women of color, as there has been a significant stigma in communities of color around reproductive health. We don’t talk about periods, our cycles, bleeding – for many women of color, we’re told those are private matters and feel shameful bringing up any problems or questions. Endo Black is dedicated to crushing those barriers, and they are doing a fantastic job. One of the main ways they do this are through their ambassador program which equips individuals to raise awareness and support the mission of Endo black in the community. In addition, they lead a Period Care Initiative that tackles the problem many teenagers and young women have affording pads, tampons, and other period care items. Another valuable resource is the Endo Guide, which is full of advice, info about endo specialists and Black doctors who treat the condition, and more.

A bit about endometriosis for those who are unfamiliar: often called endo for short, is a health disease that affects about 11% of Americans between the ages of 15-44. Like PCOS, it’s often a very long and frustrating path to diagnosis. It takes, on average, 6-10 years to finally get diagnosed, and for women of color, it can take 11-15 years.

Endometriosis is a disorder where tissue similar to the tissue inside the uterus, called the endometrium, grows outside of the uterus. It most commonly affects the reproductive systems, with endometrial tissue growing around the ovaries, fallopian tubes, and tissue lining the pelvis. But it can also affect other regions of the body, including lungs, bladder, the digestive tract, and elsewhere. The endometrium basically metastasizes throughout the body, implanting itself where it doesn’t belong. As you can imagine, this causes a ton of problems

Symptoms include painful periods, intense low back and abdominal pain, painful intercourse, pain with bowel movements or urination, heavy or irregular bleeding, migraines, breast pain, and more. It is also a major cause of infertility and has been linked to higher rates of cancer and autoimmune disease.

And yet, there is still a startling lack of awareness and knowledge about this disease. Scientists still don’t know the cause. They have some guesses, but not enough funding has been devoted to figuring out more about how to prevent and treat it. Endo Black is fighting to change that.

You can find more about them at endoblack.org.

Black Women’s Health Imperative
Let’s start with the original: The Black Women’s Health Imperative is a nonprofit with the goal of protecting and advancing health and wellness for Black woman and girls. The group originated in 1983 as the National Black Women’s Health Project, holding their first conference in Atlanta. Since then, the group has fought to bring awareness to major disparities in healthcare, setting up shop in Washington DC to lobby for massive change.

The impact of the Black Women’s Health Imperative has been and continues to be huge.
The BWHI’s Unmuting Fibroids initiative aims to empower Black women to advocate for their reproductive health by regularly speaking to their healthcare providers and their inner circle about their period – because too often, the lack of transparency about this allows painful and serious conditions like fibroids to go undiagnosed and untreated. On the policy side of the issue, they are actively lobbying for, and encourage voters to contact representatives in support of, HR 2007, the only bill in congress that provides funding and education on uterine fibroids.

Another initiative is Cerving Confidence – spelled c-e-r-v-i-n-g. This initiative is based on the startling statistic that black women are 2x more likely to die from cervical cancer when compared to white women. The Cerving Confidence program is all about encouraging black women to practice self-care by scheduling regular well woman exams to get screened for cervical cancer and to manage other health issues.

These are just a couple of the far-reaching initiatives and programs the BWHI is spearheading. As a whole, the organization has been fighting tirelessly to move the needle toward more equitable healthcare for Black women and girls, and their work is far from done. Visit bwhi.org for more information on how you can get involved.

The Broken Brown Egg
https://thebrokenbrownegg.org/

The next organization is one that is very near and dear to my heart. The Broken Brown Egg started as the personal blog of Regina Townsend, a Black woman who found herself on a nearly decade-long fertility journey. As a librarian and writer, she of course dug into the research behind infertility and found some shocking statistics. Not only was she shocked by the general stats – that 1 in 8 couples struggles with getting pregnant – but the stats about fertility in the Black community were even more outrageous.

Despite the common narrative we as Black women have grown up with – that it’s easy to make a baby – that is far from the truth. Regina discovered that Black women are actually 2x more likely to face infertility than women of other races. And things like fibroids, endometriosis, and PCOS also disproportionately affect Black women.

This realization led Regina on a mission to fight against harmful stereotypes and misconceptions that have been keeping the Black community from seeking help with reproduction for decades. She is all about raising awareness, ending the stigma, and promoting access to treatment – within and for the Black community.

As she says on her blog, “infertility is lonely enough without feeling like a minority inside of a minority.”

What started as a personal blog to document and process her own journey turned into an active and far-reaching community that supports primarily African-American women between the ages of about 25-45, and the medical and fertility professionals who are looking to connect with them.

In addition to all of the information Regina puts out on her blog, she has cultivated an intimate and safe space for more than 650 women in her Broken Brown Egg – Shell Shocked community.

The Broken Brown Egg Foundation was founded in 2009 as a non-profit that seeks to provide resources and support in 3 major areas: Reproductive Justice & Health Equity, Reproductive Health Careers Pipeline, and Empowerment & Community.

Regina is doing amazing things through her foundation and blog, the Broken Brown Egg. Hats off to you, my friend, and I hope you, the listener, are inspired to check out the good work she is doing.

If you’d like to learn more about the Broken Brown Egg visit https://thebrokenbrownegg.org

Fertility for Colored Girls
https://www.fertilityforcoloredgirls.org/

The next organization is also focused on helping women of color: Fertility for Colored Girls has a mission to provide education, awareness, support and encouragement to African American women, couples and other women of color experiencing infertility and seeking to build the families of their dreams. Additionally, FFCG seeks to empower African American women to take charge of their fertility and reproductive health.

I’ve spoken many times on this podcast about the biases that exist for Black women and women of color in reproductive health. This group is dedicated to fighting against those biases and helping women of color find their voice, strength, and hope when facing infertility.

Fertility for Colored Girls was founded by Rev. Dr. Stacey Edwards-Dunn, who spent years teaching reproductive health education in the inner city of Chicago. Today, she continues her mission on a broader scale, offering several grants, educational opportunities, and resources for women of color who are struggling with fertility. The organization has several support groups led by Fertility Navigators where women can connect with others on similar journeys, to share stories and gather the strength and resources needed to move forward.

Black Mamas Matter Alliance
https://blackmamasmatter.org/

Last but not least in this category is The Black Mamas Matter Alliance. This is organization is leading the fight for Black maternal health rights and justice. From their website, “We envision a world where Black mamas have the rights, respect, and resources to thrive before, during, and after pregnancy.”

Their 4 goals include the following:

  1. Change policy that is grounded in the human rights framework that addresses Black maternal health inequity and improves maternal health outcomes for Black women
  2. Cultivate innovative research methods, particularly by leveraging the talent and knowledge that exists in Black communities.
  3. Improve and advance care for Black Mamas, including ways to introduce and enhance holistic and comprehensive approaches to their care,
  4. Shift the cultural conversation on Black maternal health and amplify the voices of Black mamas

The Black Mamas Matter Alliance began as a partnership between the Center for Reproductive Rights and SisterSong Women of Color Reproductive Justice Collective, after these two groups worked together to report on the appalling lack of access and inequity that Black women face in the Southern states as they try to have healthy babies.

In a nutshell? Black women, particularly in the South, often have trouble getting proper prenatal care, which leads to pregnancies that are riskier and less healthy. And, for a variety of reasons, more Black women die during or shortly following childbirth than any other demographic. Infant mortality is similarly unacceptable.

Check out blackmamasmatter.org to get involved.

The next organization I’d like to share is specifically for the LGBTQ+ community.

Family Equality
Family Equality is fighting to protect and support LGBTQ+ families. Their mission is to advance legal and lived equality for LGBTQ families, and for those who wish to form them, through building community, changing hearts and minds, and driving policy change.

Family Equality’s vision is for a future where all LGBTQ families, regardless of creation or composition, live in communities that recognize, respect, protect, and value them. A world in which every LGBTQ person has the right and the opportunity to form and sustain a loving family, regardless of sexual orientation, gender identity, race, religion, national origin, geography, socioeconomic status, disability, or the intersection of those characteristics. And were systems of service and support are free of discrimination to https://www.familyequality.org/ maximize opportunities for LGBTQ youth needing permanency and LGBTQ adults seeking family formation through adoption, foster care, assisted reproductive technology or other means.

The last few groups I plan to talk about are particularly for women who have experienced loss.

Sisters in Loss Foundation
https://sistersinloss.com/

Sisters in Loss is a maternal-child health education company on a mission to help end the silence around pregnancy and infant loss, and infertility among Black women. The founder Erica believes that the stigma and shame experienced within the community can be replaced by storytelling and healing.

Erica started Sisters in Loss after experiencing her own loss: after a stillbirth at 39 weeks and miscarriage at 18 weeks, she was desperately seeking a community of black women who she could share her experience with. When she discovered that a large gap existed, she set out to start her own podcast and community, which has now grown into the company as it exists today.

Sisters in Loss offers a training institute for women who wish to become bereavement doulas, and Erica works with women as a grief specialist and doula. Erica and the Sisters in Loss community is dedicated to helping Black women replace their silence with storytelling and heal after loss. You can find out more about Sisters in Loss, Erica’s story, and how to get involved at sistersinloss.com.

Daughters of Hannah Infertility & Miscarriage Support Group.
The next group started as a small local church group but has now expanded to meet virtually with women all over the world. Daughters of Hannah is a support group for women of color who are experiencing infertility, pregnancy loss, or other issues related to reproductive health and trying to conceive. The group is named for Hannah in the Bible. As Hannah did in 1 Samuel 1, we acknowledge the challenges of infertility, and yet, we endure, hope, and believe in the power of prayer.

This is a faith-based community that began by meeting monthly. While church membership isn’t required to attend, I will say that you’ll want to at least have an openness and respect for Christian faith and prayer. The group welcomes women who are facing a variety of issues, including PCOS, endometriosis, age-related infertility, fibroids, miscarriage, unexplained infertility, and who are approaching fertility in many different ways, from TTC naturally to assisted reproduction.

Search for Daughters of Hannah on Facebook to request to join their community. You can also find Daughters of Hannah on Clubhouse & Instagram (@hannahsdaughters).

Conclusion
There are many other wonderful, mission-driven organizations out there, so this is by no means an exhaustive list. These are, however, organizations that deserve recognition for the impact they are creating in the fertility world. It is my hope that you found something on this list that inspired you to get involved with, donate to, or seek out support for your own journey.

Check out the show notes for links to each of the groups I talked about today and be sure to visit us on social media to let us know what you think. We’d love shout out in your stories if you start following any of the organizations you learned about during this episode – tag @fertilitycafe on Instagram or @fertilitycafe, or @familyinceptions on Facebook.
Thank you so much for joining me today. Remember: “love has no limits – neither should parenthood.”

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