The mission of the Turner Syndrome Foundation (TSF) is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome. Early diagnosis and comprehensive treatments over the lifespan may lead to a brighter and healthier future for all young girls and women with Turner syndrome. TSF is a registered 501(c)(3) nonprofit organization

The Turner Syndrome Society of the United States (TSSUS) is a national non-profit organization serving the important and diverse needs of the Turner syndrome community. The Society was created in 1987 by a group of women in Minnesota for the purpose of networking and support. Today we have over 600 members and 100+ volunteers supporting our valuable programs.

We understand every person’s needs are unique and Turner syndrome affects individuals differently. Education is our foremost goal whether you are a member of our society or a guest, you can access the latest Turner Syndrome Clinical Guidelines, attend our National Conference, get support from parents and individuals who have experience with TS, attend local group events, plus access other resources.

Membership benefits include special opportunities and discounts

The Butterfly Society is a fundraising initiative allowing committed donors to enable TSSUS to support the TS community.

The Turner syndrome clinic provides compassionate care with a multidisciplinary approach. We are a subspecialty program, which means that we do not serve as primary care, but instead we provide each patient with a comprehensive evaluation, specific to the needs of people with Turner syndrome. In turn, our doctors work with the patient’s primary care provider to identify specialty needs, to coordinate care, and to improve outcomes. Our clinic was inspired by a wish to help those with Turner syndrome obtain resources important to their well being at a single institution.

Turner Syndrome Global Alliance (TSGA) was incorporated in May 2014 and granted its 501c3 nonprofit status in September 2014. We are further classified as a 509(a)(2) Public Charity and all donations made to TSGA are tax-deductible to the full extent of the law. We are based out of Overland Park, Kansas and seek to have a global impact through our work.

TSGA was founded by parents of young women with Turner syndrome (TS). We aim to have a direct impact on the lives of girls, women, and families living with TS by working to include TS in the national conversation on genetic research. We are the voice for a patient and parent perspective as we seek collaboration with scientists, researchers, and doctors to ensure that TS research and resources have meaningful outcomes.

Since 2014, TSGA has worked to develop a national network of Turner Syndrome Clinics to improve the quality of care for girls and women with TS. This network of Clinics provides an opportunity to for clinicians to share resources and develop expertise. Beginning in 2019, TSGA is working with key Clinics to implement an data collection project, through an existing system called REDCap, that will allow multiple institutions to collect and share data for research. We anticipate that this project will lead to increased research and knowledge about TS that can be translated into updated care through the Clinics.

Leading research into stillbirth causes, prevention, and support

Organization and App for correctly counting kicks during pregnancy.

March of Dimes leads the fight for the health of all moms and babies.

The gift of time

NILMDTS offers the gift of healing, hope and honor to parents experiencing the death of a baby through the overwhelming power of remembrance portraits. Professional-level photographers volunteer their time to conduct an intimate portrait session, capturing the only moments parents spend with their babies. Parents are gifted with delicately retouched heirloom black and white portraits free of charge.

These priceless images serve as an important step in the healing recovery for bereaved families. NILMDTS remembrance photography validates the existence and presence of these precious babies by honoring their legacy.

NILMDTS recruits, trains, and mobilizes professional quality photographers around the world. Through NILMDTS, medical personnel are given a meaningful option to offer bereaved parents by creating remembrance portraiture for their babies.

Through further engagement in the organization, such as the NILMDTS Remembrance Walk and online support, families become a part of a compassionate and supportive community. Parents gain a sense of inclusiveness, alleviating the alienation and perception of being alone in their pregnancy or infant loss journey.

Our Story

The story of Through the Heart is one you may be familiar with – it is a story of loss, hope, and perseverance.

In February 2013, my husband Sean & I lost our first child, a daughter, at 20 weeks into the pregnancy. It was one of the most difficult, heart-wrenching, emotional situations either of us has ever dealt with. In the days and weeks following the loss, we felt alone. All around us the world was continuing on as it always had and yet ours had stopped. We felt disjointed, as though we didn’t know how to live a normal life anymore. We went back to work, back to our daily routines, but we were just going through the motions. Many people around us acted as though nothing had happened. We learned in that time how deafening silence can be.

Losing a child changes a person. It carries a special type of pain that really can’t be described, only understood by those who have been there. In the midst of our grief, we decided we didn’t want anyone else to ever feel alone in the same way we did. And so, in March 2013, Through the Heart was born.

Molly Bears exists to create a positive and comforting impact for families enduring any form of infant loss.

Grief support group

Blog from Benny’s mama

Losing a child is arguably the hardest thing we could ever be asked to do. After Luke passed away I didn't want to put words to what had happened and how I was feeling, but I searched the Internet looking for stories like mine. I just didn't want to be alone in my despair. I hope you find yourself in some of my stories and I hope it gives you a little bit of peace.

Supporting families after a child dies.

The official line: I’m a research professor at the University of Houston where I hold the Huffington Foundation Endowed Chair. I am also a visiting professor in management at The University of Texas at Austin McCombs School of Business. I’ve spent the past two decades studying courage, vulnerability, shame, and empathy, I’m the author of five #1 New York Times bestsellers, and I’m the host of the weekly Spotify Original podcasts Unlocking Us and Dare to Lead.

My books include Dare to Lead, Braving the Wilderness, Rising Strong, Daring Greatly, and The Gifts of Imperfection. Most recently I collaborated with Tarana Burke to co-edit You Are Your Best Thing: Vulnerability, Shame Resilience, and the Black Experience.

The bottom line: I believe that you have to walk through vulnerability to get to courage, therefore . . . embrace the suck. I try to be grateful every day, and my motto right now is “Courage over comfort.” I do NOT believe that cussing and praying are mutually exclusive. And, I absolutely believe that the passing lane is for passing only. I’ve been married to Steve for almost 25 years, and we have two amazing kids, Ellen and Charlie, and a weird Bichon named Lucy.

To provide support and resources for families who have experienced the death of a baby (ies) and are living without a child to raise.

To promote healing, peace, and self-care.

To raise awareness surrounding the issues of babyloss, secondary infertility, and the choice to remain childless after loss.

To acknowledge/recognize the motherhood of women without children to raise.

To foster a “trigger-free” space where mothers can connect, process grief, and find healing without the additional stress and heartache of pregnancy, birth, and motherhood after loss conversations.

Founded in 2012, Still Standing Magazine has been the world’s leading online voice in breaking the silence on child loss – from conception to adulthood, and infertility. We share stories from around the world of writers surviving the aftermath of loss and grief – and include information on how others can help.

This is a page for all grieving parents. If you grieve the loss of your child, no matter the circumstances, you are welcome here.

It’s OK to not be OK.

If your life has exploded into a million little bits, you don’t need platitudes. You don’t need cheerleading. You don’t need to be told this all happened for a reason.

Some things cannot be fixed. They can only be carried.

David’s personal experience as a child witnessing a mass shooting while his mother was dying in a hospital helped him begin his journey. For most of his life, David has taught physicians, nurses, counselors, police, and first responders about the end of life, trauma, and grief. He facilitates talks, workshops and retreats for those experiencing grief. However, despite his vast knowledge on grief, his life was turned upside down by the sudden death of his twenty-one-year-old son. It inspired him to write his newest book, Finding Meaning.

The TEARS Foundation seeks to compassionately lift a financial burden from families who have lost a child by providing funds to assist with the cost of burial or cremation services. We also offer parents comprehensive bereavement care in the form of grief support groups and peer companions.

Our purpose is:

to support anyone affected by the death of a baby. to work in partnership with healthcare professionals to ensure that bereaved parents and families receive the best possible care. to promote improvements in practice and fund research to help reduce the number of babies dying.

Everything we do – the services we run, the public health messages we promote, the way we raise money – is focused around these three aims.

Grief support for the rest of us

You don’t have to grieve alone. What’s Your Grief is a place for sharing, support, resources, & more.

Saying Goodbye provides comprehensive information, advice, support and much more to anyone who has suffered the loss of a baby, at any stage of pregnancy, at birth or in infancy