The Fetal Health Foundation Helps Families  Diagnosed with a Fetal Condition

The Fetal Health Foundation (FHF) is a well respected nonprofit organization that provides support and information, funds research, increases awareness, and serves as an outlet for leading medical information pertaining to fetal conditions and syndromes.

More than 800,000 pregnancies are affected by a fetal syndrome diagnosis each year. The Foundation provides a crucial link to families so that they may access world class maternal fetal medical experts as well as diagnosis-specific information.  The Foundation also provides connections and counseling to support families through a difficult time.  In addition, the Foundation works directly with fetal centers to grant important research funds to further study fetal syndromes and treatments. To date, FHF has provided financial assistance to more than 300 families and awarded nearly $100,000 in research grants.

CONTACT INFO

Talitha McGuinness, Marketing & Creative Director
Phone: 980-721-5799
talitha@fetalhealthfoundation.org

We’re happy to recommend and put you in touch with a maternal-fetal medical expert specializing in any fetal condition or to connect you with a family who has experienced a fetal syndrome.

FACT SHEET

What

The Fetal Health Foundation provides a range of support for families when their unborn children is diagnosed with a fetal condition. To learn details on the full range of syndromes, visit Fetal Syndromes. A few of the conditions supported include:

  • Twin-to-Twin Transfusion Syndrome (TTTS)
  • Lower Urinary Tract Obstruction (LUTO)
  • Amniotic Band Syndrome (ABS)
  • Selective IntraUterine Growth Restriction (SIUGR)
  • Acardiac Twinning (TRAP)
  • Hypoplastic Left Heart Syndrome (HLHS)
  • Isoimmunization (and other causes of fetal anemia)
  • Alloimmune thrombocytopenia
  • Iatrogenic preterm rupture of membranes
  • Select congenital heart defects

 

Why

More than 800,000 pregnancies are affected by a fetal syndrome each year, causing the deaths of more than 200 babies every day. As the majority of the volunteers who support the Fetal Health Foundation (FHF) have been affected by a fetal syndrome, their goal is to be the leading support organization for families by providing connections to leading maternal fetal medical experts, the latest diagnosis-specific information and counseling and support. They maintain strong relationships with healthcare professionals in order to serve as a direct liaison with leading researchers and facilities to provide the most comprehensive support process possible.

 

How We Help

We see our most important role as that of being THE support system for families diagnosed with a fetal syndrome. The Foundation helps families navigate their diagnosis by offering information on the various treatment options and initiatives available to them, and even offers a comprehensive list of treatment centers around the country. The Foundation assists with family matching and bereavement support for those who experience loss. FHF also provides educational materials related to specific diagnoses upon request, in order to address families’ questions and deliver hope.

The Fetal Health Foundation initiated a program to award Medical Research Grants in 2014. This program allows FHF to directly support efforts directed toward fighting and ending fetal syndromes.

The Fetal Health Foundation shares information thru a variety of channels including Connexions (a digital publication linking families to the medical realms on fetal conditions), its website, a monthly e-newsletter distributed to more than 10,000 readers, advertisements, and social media channels such as Twitter and Facebook.

BACKGROUNDER

Fetal Health relies on several fundraising and awareness campaigns each year, namely its Great Candy Run national race series, which draws more than ten thousand participants and spectators and reaches millions of households in spreading the word about fetal syndromes and the importance of research and support for those affected. Currently Great Candy Run races are scheduled for Denver, CO, Minneapolis, MN and Seattle/Redmond, WA.

Our Founders' Family Story

No parent should ever have to accept that there is no hope to save their child’s life. Having battled TTTS, we experienced firsthand the power of hope. Twin to Twin Transfusion Syndrome (TTTS) should have taken our daughters' lives, but after our frantic search for information and resources, fetal surgery saved them. Today, as grateful parents of healthy identical twin girls, we are proud as founders to continue to lead the Fetal Health Foundation, a nonprofit dedicated to hope for expectant parents who’ve received a fetal syndrome diagnosis.

Like us, families diagnosed with a fetal syndrome have only a few emotional days to find a life-changing medical treatment. Sadly, and far too often, they’ve been told there is no hope for their baby or babies to survive. In this terrifying moment, Fetal Health is there to provide emotional support and direct connection to leading fetal treatment centers and doctors around the world.

In 2004, I left my full-time position as a CFO and spent the next eight months creating the TTTS Race for Fetal Hope (fka Race for Fetal Hope). Today there are a series of events to support fetal syndromes. The flagship race, The Great Candy Run, raises awareness and funds to support families with fetal syndromes, and funds research to improve fetal syndrome outcomes. Quickly we discovered that funding wasn’t the only unmet need in our community.

In 2006 we founded the Fetal Health Foundation, a 501(c)(3) non-profit charity that provides factual medical information on fetal syndromes, provides unconditional support to families dealing with these syndromes, provides advocacy and awareness around fetal syndromes and provides research grants funding new treatments and technologies providing hope to save our babies.

We hope you’ll join us, along with our inspirations, our daughters Aspen and Ashley, as we continue our efforts make sure every child battling a fetal syndrome has HOPE.
-Lonnie and Michelle Somers

You can read more of our story here: The Somers' Story

BIOS

The Fetal Health Foundation is led by a volunteer Board of Directors comprised primarily of families directly and indirectly affected by fetal syndromes. Please visit the About Us section of our website for bios on each of our board members.  In addition, FHF collaborates with a Medical Advisory Board that is comprised of leading maternal fetal medical professionals across the United States.  To connect with a maternal fetal medical specialist, please contact Talitha McGuiness by phone 980-721-5799 or email (talitha@fetalhealthfoundation.org)

BY THE NUMBERS

  • 300 people assisted financially
  • $75,000 awarded for research projects at three leading maternal fetal centers since 2014: Children’s Hospital of Los Angeles – study of the impact of Twin-to-Twin Transfusion Syndrome (TTTS) on fetal brain development; University of Colorado – development of a minimally invasive polymer to improve outcomes for babies diagnosed in utero with Spina Bifida; John Hopkins Center for Fetal Therapy – development of an exact, three dimensional model to aid surgeons performing in-utero surgery for fetal Spina Bifida.
  • $25,000+ support provided to maternal fetal centers and minor research projects
  • 1,400 families assisted via phone and email support
  • 30,000 website impressions per month
  • 15,000+ Facebook followers
  • 800 Twitter followers
  • 6,500 participants in the 2015 Great Candy Run with gross revenues of $150,000. 2015 marked the 11th year for this race, which was created to raise awareness, funds and hope for fetal syndromes. The Race has grown from a single-city event with 400 participants and $20,000 in gross revenues to a multi-city event that has been ranked the best race in Colorado for kids two years in a row by Competitor Magazine.

“I really appreciate Fetal Health’s assistance during a time like this. It was truly a blessing and has helped a great deal. I will never forget the help you all provided and look forward to becoming a donor one day.”
– anonymous family assisted through a travel grant.

 

“I gave birth to my twins on October 13th! They were 27 weeks. They are both doing really well. My recipient twin had a rough start, but is finally back on track!”
– anonymous family assisted through emotional and informational support.

 

“Our lab is delighted to hear we have been selected as the winners of the Nathanael & Gabriel Stowell Research Grant Award. These funds will help us pursue our goal of understudying the etiology of Neural Tube Defects and developing an innovative alternative to open fetal repair using bioengineering approaches in a minimally invasive fashion. Ultimately, our hope is to overcome this devastating birth defect and spare its monumental emotional toll.”
– research team at the University of Colorado

 

“Fetal Health is hope that what happened to our family won’t happen to another.”
– Anastasia, Facebook follower

 

“I cannot thank you enough for providing a travel grant to me and my new family. When we found out our son has my heart disease, I was devastated that he will have to suffer all the pain and scars of surgery. It was then that reality struck that we were going to be hit with more financial burden than we could bear. Thank you for helping us refocus our energy on planning new ways to care for our son rather than focusing on being scared financially of not being able to afford medical intervention.”
– anonymous family assisted through a travel grant.

 

“Fetal Health is a candle when you feel it can’t get any darker, and a shoulder when you’re not sure you can stand up and fight anymore.”
– Richie, Facebook follower

Downloads

Fetal Health Foundation Logo

We appreciate your help in helping create awareness of fetal syndromes and welcome your use of the Fetal Health Foundation logo. We ask that you adhere to the following guidelines when using our logo:

  • Please use the logo only in the exact form provided.
  • Do not incorporate the logo into any other logo or design.
  • Do not to use the logo in a way that suggests that you or your company or products are affiliated with the Fetal Health Foundation unless you contact us for permission first.
  • The Fetal Health Foundation logo may not be used in a way that disparages the Fetal Health Foundation, its associates or affiliates, or that violates any law or regulation.

Images

The expressions on the faces of survivors and family members who have experienced a fetal syndrome go a long way in sharing the message of Hope.  The Fetal Health Foundation has a rich library of survivor and medical images. We have included a sampling of downloadable images that you may use to accompany a digital, print or television story about fetal syndromes.  In order to preserve the dignity of the participating families, you must adhere to the following when downloading any of these images:

  • Notify FHF prior to using any of these images with an explanation of the usage, placement and projected date (talitha@fetalhealthfoundation.org).
  • Incorporate the full accompanying photo description with the photo.
  • Under no circumstances may these images be used in a way that disparages the Fetal Health Foundation, its associates or affiliates or any of the people portrayed in the photo, or in a manner that violates any law or regulation.

TTTS survivors celebrate at Great Candy Run.

Caelie and Ella, TTTS survivors, age 10.

Dr. Jena Miller and the team at Johns Hopkins Center for Fetal Therapy, 2015 recipients of the Brianna Marie Memorial Research Grant.

Conor and Liam, age 6, TTTS survivors.

TTTS twin girls.

If you’re looking for a particular image to use in a story, please contact Talitha McGuinness (talitha@fetalhealthfoundation.org) with a description of the image and an overview of the story and we will search our library.

Video

Please feel free to download or share this Public Service Announcement video to help create awareness of fetal syndromes.  We ask that you contact Talitha McGuiness (talitha@fetalhealthfoundation.org) prior to embedding this video into a presentation, website, or other communications piece.  In addition, this video may not be used in a way that disparages the Fetal Health Foundation, its associates or affiliates, or that violates any law or regulation.

Publications

Connexions is an annual publication that connects leading maternal fetal medical specialists with families affected by fetal syndromes.  Download a copy here to read about the latest in fetal medicine and touching family stories.  If you are a medical center and would like to provide copies for your families, please contact Talitha McGuinness. FHF also publishes a monthly e-newsletter.  To be included on the distribution list, please complete our contact form.