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Timing is Everything! New Mexico LEND Hosts Cerebral Palsy Early Identification and Intervention Virtual Conference

On October 21, 2023 NM LEND teamed up with the NM Cerebral Palsy Early Identification and Intervention Task Force to provide a full-day conference for over a hundred doctors, therapists, nurses and developmental specialists from across New Mexico. This is the fourth year that NM LEND Director, Sandra Heimerl, collaborated with the task force planning team to organize and offer this training.



Growing Threat of a Constitutional Convention and Balanced Budget Amendment

28 state legislatures have passed resolutions in support of a Constitutional Convention to rewrite the U.S. Constitution to pass a balanced budget amendment. Such a move would restrict federal spending by $8 trillion in the first decade of its implementation and would require devastating cuts to Social Security, education, and healthcare, among other policy areas.



Senate Proposal for Balanced Budget Amendment Would Require Extreme Cuts

An analysis issued by the Center on Budget and Policy Priorities finds that the constitutional balanced budget amendment that the Senate may consider this year would compel policymakers to make devastating cuts to vital programs, including those in education, law enforcement, and medical research.



National Society of Genetic Counselors

The National Society of Genetic Counselors (NSGC) promotes the professional interests of genetic counselors and provides a network for professional communication. Local and national continuing education opportunities and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of membership in NSGC.



Dear Colleague Letter was sent to Chairman and Ranking Members

of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies

Senators Chris Murphy, Richard Blumenthal and Sherrod Brown signed on to a Dear Colleague letter to Chairman Roy Blunt and Ranking Member Patty Murray of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies in support of the funding level requests of the Protections and Advocacy Systems, DD Councils and University Centers for Excellence in Developmental Disabilities (UCEDD)

pdf File FY16 Disabilities Council Sign On Letter.pdf [download]


Representative Chris Smith (R-NJ 4th District) sent a letter to the Chair and Ranking Member of the House Committee on Appropriations

Subcommittee on Labor, HHS, Education, and Related Agenceis

Representative Chris Smith, Cochairman of the Coalition for Autism Research and Education (CARE) wrote a letter requesting a $2million increase for the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program.

pdf File FY16 LEND.UCEDD Approps.pdf [download]


Building a National Agenda for Supporting Families with an Individual with Developmental or Intellectual Disabilities

The Wingspread Report


Insure Kids Now

Connecting Kids to Coverage


Putting Patients First

A resource for estimating costs and understanding options


Website: American Academy of Pediatrics (AAP), Genetics in Primary Care Institute

In 2011, the Health Resources & Services Administration Maternal & Child Health Bureau and the AAP established a cooperative agreement to establish the Genetics in Primary Care Institute. The mission of the Genetics in Primary Care Institute (GPCI) is to increase primary care provider (PCP) knowledge and skills in providing genetic-based services. - See more at:



Website: Genetics Home Reference

Submitted by:Joann Bodurtha, MD, MPH, FAAP, FACMG, McKusick-Nathans Institute of Genetic Medicine

Physicians and families can now turn to Genetics Home Reference, a new online resource from the National Institutes of Health, to explain and understand over 500 topics on genetic conditions and related genes. The site features an illustrated tutorial that explains the basics of genetics and includes a glossary of genetics terms. The lay-friendly site is particularly helpful to parents whose newborns have been detected with a genetic condition, and are looking for easy-to-read information on specific conditions.



Website: Online Genetics Education Resources


This site, organized by the National Institutes of Health (NIH), contains numerouse links to educational resources.



Website: Online Mendelian Inheritance in Man (OMIM)

Submitted by:Joann Bodurtha, MD, MPH, FAAP, FACMG, McKusick-Nathans Institute of Genetic Medicine

OMIM is a comprehensive, authoritative compendium of human genes and genetic phenotypes that is freely available and updated daily. The full-text, referenced overviews in OMIM contain information on all known mendelian disorders and over 12,000 genes. OMIM focuses on the relationship between phenotype and genotype. It is updated daily, and the entries contain copious links to other genetics resources.



Website: Genetic Alliance

Genetic Alliance is the world�s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance�s network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations.



ACMG Newborn Screening ACT Sheets

This resource describes the interrelationships between the conditions screened in newborn screening laboratories and the markers (analytes) used for screening. For each marker(s), there is 1) an ACTion (ACT) sheet that describes the short term actions a health professional should follow in communicating with the family and determining the appropriate steps in the follow-up of the infant that has screened positive, and 2) an algorithm that presents an overview of the basic steps involved in determining the final diagnosis in the infant.



AUCD Webinar: Southeast Regional Consortium and AUCD Presents! Genetic Factors Contributing to Disability

Submitted by:Tyler Reimschisel MD, LEND Director, Vanderbilt Kennedy Center, TN
Source: Southeast Regional Consortium and Tyler Reimschisel, MD

This 60 minute webinar begins with a brief overview of the recent history of genetic and genomic medicine, with special emphasis on the rapid pace with which discoveries have been made in this burgeoning field. A significant portion of the broadcast is devoted to a discussion of the most common genetic tests that can be utilized in the evaluation of individuals with developmental disabilities.

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