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 501(c)3 organization founded to offer resources and support geared specifically towards 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.