In addition to educating families, physicians, and the general public, we also want to educate our policy-makers.  Our goal is to let every Congressman know that chromosome abnormalities are not as uncommon as they think.  In addition, they have serious implications for the health and development of children.  Therefore, research into the effects and treatments of chromosome abnormalities deserve federal funding.

Many Registry members have approached their Congressmen to let them know how important this issue is.  In this section, you can read about these efforts.

In addition to educating families, physicians, and the general public, we also want to educate our policy-makers.  Our goal is to let every Congressman know that chromosome abnormalities are not as uncommon as they think.  In addition, they have serious implications for the health and development of children.  Therefore, research into the effects and treatments of chromosome abnormalities deserve federal funding.

Many Registry members have approached their Congressmen to let them know how important this issue is.  In this section, you can read about these efforts.

In March 2010, a group of Registry members traveled to Washington DC to talk with the new director of the Institute for Child Health and Human Development at the National Institutes of Health as well as Congressmen on the Hill regarding the need for funding for research on chromosome abnormalities.  Pictured here are Registry Board members, Ben Flowe, Kristen Earl, Denise Parker and Jannine Cody with Congressman Charlie Gonzalez and his Health Policy Aide, Julie Hart. The Registry office and the Chromosome 18 Clinical Research Center are both in Congressman Gonzalez’s district.

In March 2010, a group of Registry members traveled to Washington DC to talk with the new director of the Institute for Child Health and Human Development at the National Institutes of Health as well as Congressmen on the Hill regarding the need for funding for research on chromosome abnormalities.  Pictured here are Registry Board members, Ben Flowe, Kristen Earl, Denise Parker and Jannine Cody with Congressman Charlie Gonzalez and his Health Policy Aide, Julie Hart. The Registry office and the Chromosome 18 Clinical Research Center are both in Congressman Gonzalez’s district.

The founder and president of the Registry, Dr. Jannine Cody, and her two daughters have testified in the halls of Congress twice.  Here, you can read the transcripts of their testimonies.

• 2000 Testimony
• 1998 Testimony

The founder and president of the Registry, Dr. Jannine Cody, and her two daughters have testified in the halls of Congress twice.  Here, you can read the transcripts of their testimonies.

• 2000 Testimony
• 1998 Testimony