Partners in RSV awareness

The community of people working together to raise awareness of RSV extends beyond Protect Little Lungs. Visit our advocacy partners for additional resources to help protect vulnerable babies from this serious threat.

Graham’s Foundation’s

Graham’s Foundation’s vision is a world where no parent goes through the experience of prematurity alone. Their mission is to support, comfort, inform, and guide families who experience a premature birth. They collaborate with the healthcare community and parents of preemies to improve the well- being of preterm babies and families.

 

I Was Small, But Now I'm Tall

Jennifer Degl is the mother of four, including a micro preemie who was born at 23 weeks gestation, and the founder of Speaking for Moms and Babies, Inc. Her mission is to educate the public on maternal and neonatal health issues. She is the author of three books, articles in the Journal of Pediatrics and the Journal of Perinatology, a fierce advocate, a passionate public speaker, an active member of the International Neonatal Consortium, and she also serves on the Board of Directors for the NICU Parent Network and NIDCAP Federation International. Jennifer has been a high school science teacher for 20 years and believes education is the key to healthcare reform.

 

 

Lily's Hope Foundation

The Lily's Hope Foundation is a 501(c)(3) non-profit organization that supports babies, children, and their families with unexpected and urgent needs due to premature birth. They support our NICU families by providing them with essential items since they have been unable to prepare for their child's early arrival. The Lily's Hope Families that are in the middle of this medical crisis are referred to us by hospital case workers, hospital staff, and word of mouth. They work with each individual family to answer their specific needs by way of our Packages of Hope. Their Packages of Hope include items that can often be expensive and difficult to find. Examples of the care package contents are micro- preemie/preemie clothing, preemie diapers, car seats or car seat beds, bassinets, gift cards for use toward transportation to the NICU, and much more.

Mission

Empowering and supporting families of preemies and those born with special health needs beginning life in the NICU.

Vision

Support families with resources while in the NICU. Educate families on life in the NICU. Empower families to be an advocate for their child. Support local NICUs & local NICU families. Ensure that families understand they are not alone & have available resources. Celebrate each life no matter how small or short.

National Association of Neonatal Nurses

NANN is an inclusive, diverse community of registered nursing professionals at all stages of their careers who care for newborn infants born with a variety of health challenges, including prematurity, birth defects, infection, cardiac malformations, and surgical problems. For more than 30 years, NANN has supported its members and advanced the profession by providing opportunities for members to:

  • influence care for neonates and their families
  • collaborate with leaders and peers in their field
  • gain knowledge to improve their daily practice.

NICU Parent Network

NICU Parent Network is a network of organizations offering support to families of premature infants. We are the only professional association for NICU Parent Leaders in the United States. NPN provides a platform for NICU Parent Leaders to come together as a collective voice representing the needs and best interests of NICU families in all facets of healthcare policy, care guidelines, advocacy, education & family support.

Once Upon a Preemie

Once Upon a Preemie is a short inspirational book that is written for parents whose children were born prematurely, and had a NICU stay. The book is a bed side companion to support any parent who faces the roller coaster ride of nurturing a preemie baby in the hospital until they go home. Once Upon A Preemie offers encouraging messages of hope, faith, and love.

 

 

PreemieWorld, LLC.

PreemieWorld, LLC is a support group and educational forum founded by Deb Discenza, accomplished writer, speaker, and mother to her own preemie.

Their most important goal is to help guide families through the terrifying rollercoaster of their NICU journey, and beyond into recovery. They firmly believe that each and every preemie family can grow to meet these challenges with the love and encouragement of other preemie parents and neonatal professionals.

Partners in RSV awareness

The community of people working together to raise awareness of RSV extends beyond Protect Little Lungs. Visit our advocacy partners for additional resources to help protect vulnerable babies from this serious threat.

Graham’s Foundation’s

Graham’s Foundation’s vision is a world where no parent goes through the experience of prematurity alone. Their mission is to support, comfort, inform, and guide families who experience a premature birth. They collaborate with the healthcare community and parents of preemies to improve the well- being of preterm babies and families.

I Was Small, But Now I'm Tall

Jennifer Degl is the mother of four, including a micro preemie who was born at 23 weeks gestation, and the founder of Speaking for Moms and Babies, Inc. Her mission is to educate the public on maternal and neonatal health issues. She is the author of three books, articles in the Journal of Pediatrics and the Journal of Perinatology, a fierce advocate, a passionate public speaker, an active member of the International Neonatal Consortium, and she also serves on the Board of Directors for the NICU Parent Network and NIDCAP Federation International. Jennifer has been a high school science teacher for 20 years and believes education is the key to healthcare reform.

Lily's Hope Foundation

The Lily's Hope Foundation is a 501(c)(3) non-profit organization that supports babies, children, and their families with unexpected and urgent needs due to premature birth. They support our NICU families by providing them with essential items since they have been unable to prepare for their child's early arrival. The Lily's Hope Families that are in the middle of this medical crisis are referred to us by hospital case workers, hospital staff, and word of mouth. They work with each individual family to answer their specific needs by way of our Packages of Hope. Their Packages of Hope include items that can often be expensive and difficult to find. Examples of the care package contents are micro- preemie/preemie clothing, preemie diapers, car seats or car seat beds, bassinets, gift cards for use toward transportation to the NICU, and much more.

Mission

Empowering and supporting families of preemies and those born with special health needs beginning life in the NICU.

Vision

Support families with resources while in the NICU. Educate families on life in the NICU. Empower families to be an advocate for their child. Support local NICUs & local NICU families. Ensure that families understand they are not alone & have available resources. Celebrate each life no matter how small or short.

National Association of Neonatal Nurses

NANN is an inclusive, diverse community of registered nursing professionals at all stages of their careers who care for newborn infants born with a variety of health challenges, including prematurity, birth defects, infection, cardiac malformations, and surgical problems. For more than 30 years, NANN has supported its members and advanced the profession by providing opportunities for members to:

  • influence care for neonates and their families
  • collaborate with leaders and peers in their field
  • gain knowledge to improve their daily practice.

NICU Parent Network

NICU Parent Network is a network of organizations offering support to families of premature infants. We are the only professional association for NICU Parent Leaders in the United States. NPN provides a platform for NICU Parent Leaders to come together as a collective voice representing the needs and best interests of NICU families in all facets of healthcare policy, care guidelines, advocacy, education & family support.

Once Upon a Preemie

Once Upon a Preemie is a short inspirational book that is written for parents whose children were born prematurely, and had a NICU stay. The book is a bed side companion to support any parent who faces the roller coaster ride of nurturing a preemie baby in the hospital until they go home. Once Upon A Preemie offers encouraging messages of hope, faith, and love.

PreemieWorld, LLC

PreemieWorld, LLC is a support group and educational forum founded by Deb Discenza, accomplished writer, speaker, and mother to her own preemie.

Their most important goal is to help guide families through the terrifying rollercoaster of their NICU journey, and beyond into recovery. They firmly believe that each and every preemie family can grow to meet these challenges with the love and encouragement of other preemie parents and neonatal professionals.