Maternal alloimmunization and HDFN affect women and babies around the world and have devastating consequences for patients and their families. Since the disease is somewhat rare, many providers have limited experience treating the disease and women who are facing a new diagnosis often have trouble finding accurate, up to date information on the disorder. As a result, many patients do not receive adequate monitoring or treatment during and after their pregnancies. If improperly managed, HDFN can lead to significant fetal and neonatal morbidity and mortality from cardiac failure, effusions and ascites, a condition known as hydrops fetalis or fetal hydrops. Risk continues for affected infants after birth, especially those who do not receive the right medical care, since HDFN can lead to hyperbilirubinemia, kernicterus, anemia, brain damage and infant death.
Our mission is to prevent any harm, stillbirth or infant death caused by Alloimmunization (also called Isoimmunization) and Hemolytic Disease of the Fetus and Newborn (HDFN). We are dedicated to providing patient advocacy, support, and education while promoting research and improving healthcare practices for the condition. Currently, the only known organization founded to offer resources and support to alloimmunized women and HDFN patients is the Allo Hope Foundation.
Parents often feel isolated and scared as they try to understand what the implications of the disease are. Some women find themselves educating their doctors and bearing the responsibility of convincing the medical staff to provide the right tests, monitoring, and treatments. In low income countries many of the basic medical necessities such as anti-D prophylaxis (Rhogam), intrauterine blood transfusions and phototherapy lights are not available. Alloimmunization and HDFN also affect the patients’ families, causing anxiety and emotional stress during and after pregnancy, often limiting their choice to add children to their families in the future. It can also take a huge toll financially on the families dealing with the disease since the treatments can be very expensive and families often have to travel or relocate in order to find adequate medical care.
What brings us hope is knowing that alloimmunization and HDFN do not have to be a death sentence and they do not have to prevent alloimmunized women from growing their families. In fact, most cases, with effective monitoring and treatment, result in live birth and minimal long-term health effects for the child.
What if every woman and every baby received the correct medical treatment? What if every alloimmunized pregnancy ended with a healthy baby? What if all parents had the ability to choose how many children they added to their families? What if alloimmunized women felt supported, empowered and encouraged during their high risk pregnancies? It is our hope that The Allo Hope Foundation will be able to accomplish these things.
The foundation was first dreamed of in 2018 by Bethany Weathersby. After her difficult pregnancies due to anti-Kell alloimmunization, Bethany decided to do something on a large scale to help even more alloimmunized women - she created the Allo Hope Foundation.
The Allo Hope Foundation was officially founded and registered in August of 2019. We are a 501(c)(3) tax-exempt nonprofit. This means that all of your donations to us are tax deductible.
Some of our long term goals include:
The purpose of the Allo Hope Foundation’s website about alloimmunization is to promote broad consumer education, access to resources, and relevant literature. This website does not provide specific medical advice or recommendations for patients. Individuals should not rely on the information posted on this website as a substitution for speaking with qualified healthcare professionals. As in every case, your unique medical needs and conditions require a healthcare provider familiar with your situation. The Allo Hope Foundation strongly recommends that care and treatment related to alloimmunization and HDFN be made in consultation with your physicians who are familiar with your individual health situations. While the Allo Hope Foundation can provide resources and education about current standards of care and current medical literature, we can not be used as a substitute for qualified medical care.
The Allo Hope Foundation’s Board of Directors consists of a president, vice president, and secretary. The purpose of a Board of Directors is to hold the Allo Hope Foundation accountable financially, and to make decisions regarding where the Foundation will go and what projects the Foundation will tackle. The Board of Directors have a unique blend of various skills that benefit the foundation. All of our BOD members have the best interests of the Allo Hope Foundation at heart and agree fully with our mission to: prevent stillbirth, neonatal death, and harm caused by maternal alloimmunization and HDFN. We are very thankful for our Board of Directors and their contributions.
The Allo Hope Foundation’s Medical Advisory Board consists of resource specialists, and other healthcare providers who are active in the treatment and research of maternal alloimmunization and Hemolytic Disease of the Fetus and Newborn. The purpose of a medical advisory board is to provide subject matter expertise, highlight needs from the healthcare community, answer strategic questions, and to help us keep our finger on the pulse of current research and treatments. We have selected some of the best and brightest experts in the fields of maternal alloimmunization and related disciplines to help us meet the pressing needs of alloimmunized women and their families. We are very thankful for our Medical Advisory Board members and their contributions.
Kenneth J. Moise Jr, M.D. is a professor in the Division of Maternal-Fetal Medicine in the Department of Obstetrics and Gynecology, and Reproductive Sciences and in the Department of Pediatric Surgery at The John P. and Kathrine G. McGovern Medical School at The University of Texas Health Science Center at Houston (McGovern Medical School at UTHealth). He currently sees patients in The Fetal Center at Children’s Memorial Hermann Hospital in Houston.
Dr. Moise completed his residency in Obstetrics and Gynecology at Vanderbilt University followed by a fellowship in Maternal-Fetal Medicine at Baylor College of Medicine. Dr. Moise is the former Director of Maternal-Fetal Medicine at Baylor College of Medicine and at the University of North Carolina School of Medicine. He is the former President of the International Fetal Medicine and Surgery Society and served for many years as the Treasurer/Secretary of that organization. He is a founding member of the North American Fetal Treatment Network (NAFTNet) having served on its executive board and its steering committee. He is board certified in general Obstetrics and Gynecology as well as Maternal-Fetal Medicine.
Dr. Moise’s interest in fetal therapy spans a 30 year period. He is recognized world-wide for his contributions in the fetal treatment of Rh disease including the development of middle cerebral artery Doppler for the non-invasive detection of fetal anemia and the use of free fetal DNA to determine the fetal RND status in the U.S.. He was instrumental in the formation of the three fetal centers – the Center for Maternal and Infant Health at the University of North Carolina, the Texas Children’s Fetal Center in Houston and The Fetal Center at Children’s Memorial Hermann Hospital in Houston. In 2019, he was awarded the Lifetime Achievement Award by the Society for Maternal-Fetal Medicine for his work in Hemolytic Disease of the Fetus and Newborn.
Dr. Trevett joined Georgia Perinatal Consultants in April of 2008. He received his undergraduate degree from the College of the Holy Cross in 1994 and his medical degree from the State University of New York at Buffalo. He performed his Obstetrics and Gynecology residency at the University of California, San Diego, graduating in 2002, then went on to complete a three-year fellowship in Maternal Fetal Medicine at the University of North Carolina, Chapel Hill in 2005.
During his fellowship, Dr. Trevett published numerous articles and book chapters, and gave multiple invited lectures. He was also given an award for outstanding research at the 2004 Annual Convention of the Society of Maternal Fetal Medicine for his research involving the use of Phenobarbital to prevent neonatal exchange transfusions in pregnancies complicated by isoimmunization. He is currently an invited reviewer for the American Journal of Obstetrics and Gynecology.
Dr. Trevett enjoys all aspects of Maternal-Fetal Medicine, especially prenatal diagnosis with ultrasound and critical care for pregnant women. His practice is dedicated to improving the health and well-being of pregnant women and their babies
Bio coming Soon!
Dr. Lopriore is a professor of neonatology and fetal medicine and head of the Neonatal Intensive Care Unit at the Leiden University Medical Center (LUMC). Dr. Lopriore graduated from medical school at Leidin University in 2006. In 2016, he was appointed Professor in Neonatology of the Leiden University Medical Center. His research focuses mainly on the origin, management and outcome in various fetal disorders, including complicated monochorionic twins (with TTS, TAPS, or sIUGR) and fetal hematologic diseases (anemia or thrombocytopenia). The ultimate goal of his research is to improve perinatal survival and in particular the long-term outcome in these vulnerable babies.
The Allo Hope Foundation is a patient advocacy organization driven by patients and centered around patients and their families. This is why our patient advisory board (“PAB”) plays such a crucial role in our foundation as we try to live out our mission. The PAB consists of women who have been personally affected by maternal alloimmunization and HDFN. These women are active in the alloimmunization community and care deeply about other families facing the disease. The members of the PAB use their own experience and knowledge of the disease to help us identify and meet the most pressing needs in the patient community and help us ensure that the patient perspective is represented in all we do. We are very thankful for our PAB members and their contributions.
Allison was diagnosed with anti-Kell antibodies during her second pregnancy when she went for her initial prenatal blood work. Allison says, “It was incredibly unsettling to have a nurse respond “I don’t know” when I asked if my baby was going to be okay. I found Bethany’s blog that day and that was my primary source of information throughout that pregnancy.” Allison’s second alloimmunized pregnancy required 5 intrauterine transfusions and an additional post-birth transfusion. During her last pregnancy, Allison found out that she has a second antibody, which has yet to be identified. Allison and her husband Alberto currently have 3 beautiful children - 2 sons and a daughter. Allison has been active for years in various support groups for alloimmunized women. Recently she helped spur efforts to translate introductory information about alloimmunization into other languages. These resources are used to help spouses and family members understand what is happening during and after pregnancy. Allison received her degree in Spanish from Augsburg University, and currently runs her own financial services firm where she does bookkeeping, AR/AP, payroll, and more for small businesses. When she isn’t working, Allison enjoys watching movies, going bowling with family and friends, and gardening.
Jessica is a native of Denver, Colorado. In February of 2019, she and her husband Jesse were overjoyed to learn that she was pregnant with their second child. Because her first pregnancy had been relatively normal, and she and Jesse had the same blood type, they were surprised to learn that her routine blood work came back positive for anti-Kell antibodies. Her husband was immediately sent for testing which confirmed that he was heterozygous for the Kell antigen. With guidance from other moms and a wonderful maternal fetal medicine team, their son Wyatt was born in September 2019. After 3 IUTs and 2 post birth transfusions, he is now a thriving, healthy baby. Jessica is active in peer-to-peer support group, and shares her story with friends, family, and healthcare providers - many of which have never had an anti-Kell patient before. Jessica graduated from Regis University with a degree in Business Administration. She currently works for the City and County of Denver. In her spare time, you may find Jessica and her family visiting museums, zoos, and traveling.
In Jody’s third pregnancy, she learned that she had developed anti-D and anti-C antibodies. Weekly ultrasounds meant that this was a pregnancy unlike any of her previous ones. After giving birth to her son Casen at 38 weeks, blood work revealed that he was affected by the antibodies. This led to a 10 day NICU stay with IVIG, intensive phototherapy, and a post-birth transfusion. After Casen’s first birthday, Jody and her husband John began trying to grow their family. After losing their son Owen at 13w4d to causes unrelated to the antibodies, Jody became pregnant again. Jody says, “We were so excited to be expecting our rainbow baby boy. However our journey with Mack got serious very quickly when MoM were already high at 16 weeks. Mack had his first transfusion at 17 weeks and 4 days. He had two more successful transfusions over the next 2 weeks. Sadly, we lost our sweet Mack just shy of 20 weeks when I went into preterm labor caused by chorioamnionitis—an infection contracted from one of the transfusions.” After losing Mack, Jody helped start a fundraiser to provide a Cuddle Cot for her hospital. Jody uses her experiences to help educate friends, family, and women in peer-to-peer support groups about antibodies and HDFN. Jody earned a degree in Nursing from Colby Community College, and works as a Registered Nurse. Jody enjoys spending her down time crafting and attending BBQ competitions with her family.
Molly became aware of her anti-S and anti-E antibodies during her most recent pregnancy. During an evaluation for early pregnancy bleeding, her weak-D antigen status was also identified, and she received her first dose of RhoGAM after not having received treatment in her previous pregnancies. In learning about her condition, she became her own advocate for appropriate prenatal and postpartum care and was fortunate enough to welcome her second child who required no interventions. Molly and her husband Conner have two sons, Ronan (born March 2017) and Hayes (born December 2018). Thanks to the support she has received from her peers in the Allo Hope Organization and the knowledge of skilled providers, Molly and Conner plan to add to their family in the future. Molly received her degree in Biology and Sociology from Wake Forest University. When she is not chasing children, baking, crafting, and being an active member in the foundation, Molly enjoys her career at Venebio Group, LLC where she participates in life sciences consulting including scientific writing, drug development and health informatics.
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Let us know what you need as a member of the alloimmunized community. Do you need more resources? Help finding a medical alert card? Ideas for how to grow your family? Contact us and let us know how we can serve you.