We work closely with several groups to help on common public policy and funding goals. These partnerships are key to our impact and an important leg in our advocacy stool. Like we say, Together, We’re Stronger.

One of these key partnerships is the Friends of the NICHD. The NICHD is the National Institute for Child Health and Human Development. It is one of the institutes at the National Institutes of Health (NIH) and funds most of the Fragile X research at NIH. The Friends work together to support, overall, the funding level for NICHD, which flows down to each of the research areas, including Fragile X.

We signed the below letter, sent to the House and Senate Appropriations Subcommittee, which funds the NIH. The letter was cosigned by well over 100 organizations, including, for Fragile X, us and FRAXA.

April 29, 2019

Dear Chairmen Blunt and Cole, and Ranking Members Murray and DeLauro:

As you prepare to mark up the Fiscal Year 2019 Labor, Health and Human Services, and Education Appropriations bill, we ask you to consider our coalition’s support for funding the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the National Institutes of Health (NIH).

The Friends of NICHD are very grateful for the strong, bipartisan support your subcommittees have given the NIH and NICHD. Thanks to your leadership, NIH has received significant increases in funding in recent years.   In testimony we’ve submitted to your subcommittees, the Friends of NICHD have urged you to continue supporting NIH and NICHD in FY 2020. Specifically, we’ve endorsed the Ad Hoc group for Medical Research FY 2019 funding recommendation, which would give the NIH $41.6 billion, a $2.5 billion increase over the agency’s FY 2019 level, and NICHD a proportionate increase bringing its funding to $1.6 billion in Fiscal Year (FY) 2020, an increase of $94 million over FY 2019.

The Friends of NICHD is a coalition of over 100 organizations representing scientists, physicians, health care providers, patients, and parents concerned with the health and welfare of women, children, families, and people with disabilities.  A list of organizations comprising the Friends of NICHD is included in the appendix to this letter.  We are pleased to advocate for the extraordinary work supported by NICHD.

Since its establishment in 1963, NICHD has achieved great success in meeting the objectives of its broad biomedical, behavioral, and social research mission, which includes research on child development before and after birth; women’s health throughout the life cycle; maternal, child, and family health; learning and language development; reproductive biology; population health; and medical rehabilitation. With sufficient resources, NICHD can build upon the promising initiatives it has undertaken for over 50 years, to produce new insights into human development, and develop solutions to health and developmental problems throughout the world, including those individuals and families in your districts and states, and expand efforts, including:

  • Increasing investment in longitudinal behavioral and biobehavioral work on child developmental trajectories, across infancy, childhood, and adolescence, in both normative and at-risk environments, across diverse contexts (school, home, and community) and including underrepresented and vulnerable groups;
  • Improving survival rates, neurological outcomes, and birth defects rates for preterm infants;
  • Supporting research to address unique effects of the opioid epidemic on newborns, children, and their families;
  • Training the next generation of pediatric clinical investigators;
  • Developing effective prevention, treatment, and intervention strategies for children and adults with developmental disabilities;
  • Encouraging research to better understand the mechanisms of disparities, to include social determinants of health and genetic factors that adversely affect pregnancy outcomes;
  • Better evaluating the health outcomes of spinal cord injuries;
  • Using robotics to improve technologies for prosthetic limb production;
  • Investing in large-scale longitudinal studies to understand how social, environmental and genetic factors affect the long-term health and well-being of children and adults;
  • Development of novel treatment methods for congenital endocrine disorders; and,
  • Facilitating research regarding the causes and implications of the increasing rates of maternal mortality in the U.S.

With sustained support in FY 2020, NICHD will be able to continue funding research and research training activities to advance its mission to ensure that every person is born healthy and wanted, that women suffer no harmful effects from reproductive processes, and that all children have the chance to achieve their full potential for healthy and productive lives. We thank you for your longstanding support of the NIH and encourage you to make NICHD a top priority as you work on the FY 2020 Labor-HHS appropriations bill.


Joseph Laakso, 2019 Chair, Friends of NICHD

Erin Kramer, 2019 Vice-Chair, Friends of NICHD