Advocacy

Fighting for Our Children’s Futures

The Trisomy 18 Foundation is at the forefront of public policy, working to improve the lives of children impacted by Trisomy 18 and their families. Our advocacy work focuses on educating and mobilizing policymakers in a nonpartisan fashion to achieve the mission of the Trisomy 18 Foundation: to advocate for compassionate, supportive care for children and families, to fund research that seeks to reduce or eliminate life-threatening and quality of life challenges facing patients with Trisomy 18, and to create a world where Trisomy 18 is a preventable and treatable condition.

Supporting Research

The Trisomy 18 Foundation is committed to advocating for and supporting research that helps us understand the cause of Trisomy 18 and develop new therapies and treatment options to improve the outcomes for children born with the condition. This research is critical to creating a brighter future for people with Trisomy 18 syndrome.

Our Research Program focuses on these goals:

  • To offer grants for scientists at different stages of their careers. This seed funding is essential for many scientists to obtain preliminary data required to compete for more competitive grants at the National Institutes of Health or other organizations.
  • To announce study participation opportunities in biomedical studies to our Trisomy 18 syndrome and related disorders community to help scientists reach their enrollment goals.
  • To help connect researchers and scientists to obtain resources—such as patient registries, biological samples and mouse models—that they might need to further research into the condition.
  • To advocate with members of Congress on behalf of the research community for adequate funding of the National Institutes of Health and other government institutions where researchers usually apply for funding. We also advocate at the National Institutes of Health for grant mechanisms that will benefit the Trisomy 18 and related disorders population.
  • To act as a convener, organizer and supporter of state-of-the-art research meetings to facilitate and maintain international collaboration among scientists in this emerging field of research.

Supporting Families

We are committed to supporting all families impacted by a Trisomy 18 diagnosis and helping to ensure that all parents have access to compassionate, knowledgeable care that respects the humanity and dignity of their children.

Patients facing a prenatal or postnatal diagnosis of trisomy 18 for their child are undergoing an emotional and fraught experience, and the right support from their health care providers can make a world of difference. Our goal is to shape the dialogue in the medical and research communities and raise awareness with healthcare providers about Trisomy 18 so that they can help their patients make informed decisions about their child’s health based on accurate, up-to-date information in a compassionate, supportive way.

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