CENTER FOR DIAGNOSTIC IMMUNOLOGY AND TRANSPLANTATION
Issue:
Children’s National Medical Center in Washington, DC currently has a diagnostic laboratory focused on immunology and transplantation. There is a need to expand its capability and establish a Center for Diagnostic Immunology and Transplantation.
Why it is important:
Broadening Children’s National capability through a new center will:
- Increase the number of children that can be treated
- Expand diagnosis and research ability
- Enable the use of the newest technology for improved patient outcomes
BE GREAT and Children’s National are investing in kids by finding the cause of immune deficiency. A Center for Diagnostic Immunology and Transplantation can lead to:
- Transformation in the field for more effective treatments
- Advanced training for the next generation of immunology transplant physicians
- Diagnosing babies in-utero to increase their chance of a healthy future
Children's National Medical Center uniquely has the components needed for a successful center:
- The only immunology-trained bone marrow transplant physician in the lower mid-Atlantic
- Genetic testing, infectious disease and other specialists on-staff
- The physical space to dedicate to a center, if sufficient funding is raised
- The only exclusive provider of immunologic deficiency pediatric care in the metropolitan Washington area
- The only freestanding children’s hospital between Pennsylvania and Georgia
What is needed:
To establish the center, expansion to the diagnostic laboratory capability is necessary. This requires an investment in equipment, personnel, PhD trained specialists and research staff; so that breakthrough results can be achieved. Goals of the Center for Diagnostic Immunology and Transplantation:
- Foster new diagnostic techniques and bring them to the clinical setting
- Apply unique treatments to these small, rare patient groups and transform the field
- Develop treatment protocols to improve outcomes for transplant patients with Severe Immune Diseases
- Conduct research to improve diagnostic tools
What BE GREAT is doing about it
BE GREAT wants to see the Center for Diagnostic Immunology and Transplantation come to fruition. We are sharing Alexander’s experiences to inform others about the unexpected journey that comes with the diagnosis of an immune deficiency. Through our community and corporate events, we are raising funds to support the center’s development. This program will directly impact our belief that every child deserves to be healthy and be great.
How you can help:
If you are interested in finding out more information about this program or becoming involved, contact us.
- Learn more, download our CDI&T vision document.
Cord Blood Donation Kits
Issue:
Cord blood comes from a newborn baby's umbilical cord and placenta containing lifesaving cells. Cord blood donation isn't offered as an option at every U.S. hospital because there are a limited number of public cord blood banks around the country It costs a public bank about $1,500 to collect, test, freeze, and store a single unit of cord blood. The high cost of processing and storing donated blood and the lack of adequate funding for public cord blood banks limit the number of public banks. Some states have passed laws to educate expectant mothers about both public and private cord blood banking. While these laws offer valuable information to the public, many states don't provide the means for expectant mothers to easily donate cord blood. As a result, educational efforts can create a demand that can't be met in many local areas without additional funds to support storage and collection of cord blood units.
Why it is important:
Cord blood cells, like cells from bone marrow, are used in the treatment of over 70 life-threatening diseases, including immune deficiency diseases, a wide range of leukemia's, cancers, metabolic disorders and genetic diseases. To date, more than 10,000 patients worldwide have been treated using cord blood. The collection process is safe, easy, and painless for both mother and baby and does not interfere with delivery. After the baby is born, a medical professional will collect the cord blood. The actual collection is painless and typically takes three to five minutes. If the mother meets the eligibility requirements and the cord blood from the baby is determined to be suitable for transplant, it is stored at a public cord blood bank and is listed on the National Marrow Donor Program's Be The Match Registry for use by any patient who may need it.
What BE GREAT is doing about it:
Through your support BE GREAT is supporting the public donation campaign by sponsoring cord blood donation kits to be sent to expectant families who meet the eligibility requirements for donation and are not able to deliver their baby at a collection hospital. BE GREAT is committed to building the cord blood inventory to increase the chances that more patients like Alexander find their match.
How you can help:
If you are interested in finding out more information about this program or becoming involved, contact us.
BMT FAMILY ORIENTATION
Issue:
The duration of hospital stay for a Bone Marrow Transplant (BMT) patient and their supportive family members is varied across the population. At a minimum the stay is at least three to four weeks. Through the unexpected journey of immune deficiency, families may not have a full understanding of how to transition to the new rea
Issue:
The duration of hospital stay for a Bone Marrow Transplant (BMT) patient and their supportive family members is varied across the population. At a minimum the stay is at least three to four weeks. Through the unexpected journey of immune deficiency, families may not have a full understanding of how to transition to the new reality of being “at home” in a hospital setting.
Why it is important:
Preparation is critical, and it enables parents (and supportive care takers) to increase their awareness and allow for planning. Most importantly, preparation creates the ability to offer patients comfort during this life saving journey. Ensuring success in a hospital environment means understanding many things such as:
- Learning hospital terminology and “who is who”
- Understanding services available to the family
- Exploring the day in the life of a BMT patient and that of the family care giver
- Figuring out ways to normalize a very un-normal experience
s Alexander’s parents reflect on their experience, they were prepared for the BMT journey through their prior hospital stays. However, not everyone on the BMT journey will have prior hospital experience. As more children are identified as immune deficient through the newborn screening process, the population of children admitted into BMT programs without prior infections or hospital stays will increase. A lack of hospital experience is likely to be very overwhelming to families who are already in high-stress situations, such as complex medical procedures and decisions
What BE GREAT is doing about it:
BE GREAT has created an Orientation Session for Families embarking on this life saving journey for their child. The sessions are facilitated by parents who have already been on the journey and understand where the family is in their thoughts and can share the things they wish someone had shared with them. BE GREAT Foundation currently facilitates comfort and knowledge to incoming families to the BMT program at Children’s National Medical Center.
How you can help:
If you are interested in finding out more information about this program or becoming involved, contact us. Your financial support will help this program continue and expand this program beyond its current reach.
FAST TRACKING DIAGNOSIS
Issue:
Newborn screening tests are performed when a baby is between 24 hours and 7 days old, typically before the baby goes home from the hospital. A few drops of blood are obtained by a nurse from a heel prick on specially-designed filter paper, to be tested for a panel of developmental, genetic, and metabolic disorders. The blood is typically sent to a lab for analysis. Screening tests do not diagnose illnesses, but rather they identify which babies need additional testing to confirm or rule out illnesses.
The tests identify whether important action should be taken during the critical time before symptoms develop. In the United States, individual states regulate newborn screening, so the diseases screened for vary considerably from state to state.
On May 21, 2010, Kathleen Sebelius, Secretary of Health and Human Services (HHS) announced the addition of Severe Combined Immune Deficiency (SCID) to the core panel of 29 genetic disorders as part of her recommendation to states to adopt the national Recommended Uniform Screening Panel. In 2011, Maryland, Virginia and the District of Columbia recommended the addition of SCID to their respective newborn screen panel. Through the expanded newborn screening program happening in many US states, parents may be told their baby has an abnormal result for the SCID condition. Pediatricians need to understand the steps to take, referrals to offer and information to share with parents as the journey to diagnosis begins.
Why it is important:
The survival of SCID patients is greatly enhanced if children are diagnosed and treated before severe infections take hold. Babies with SCID appear healthy at birth, but without early treatment, such as a bone marrow transplant, these infants cannot survive.
In addition to SCID, the screening program is able to identify other severe immune deficiencies in newborns, enabling early diagnosis. The implementation of these screening programs requires the establishment of a basis of knowledge for pediatricians to get newborns babies connected with specialists for rapid screening, diagnosis and identifying a care plan for the child.
What BE GREAT is doing about it
BE GREAT is building programs to work with mid-Atlantic pediatricians in broadening their knowledge and understanding of the steps necessary when a newborn screening result is abnormal for SCID. It is critical that all of these babies get on the fast track to diagnosis. Through your support, this program will continue to develop as Maryland, Virginia, and the District of Columbia adopt the Newborn SCID Screening test.
How you can help:
If you are interested in finding out more information about this program or becoming involved, contact us.