October 17 was a great day for Turner Syndrome in the state of New Jersey. After two years of advocacy efforts, Governor Chris Christie signed AJR-65 into law establishing the month of February as Turner Syndrome Awareness Month. Turner Syndrome affects 1 in 2000 live female births and 10% of all miscarriages can be attributed to complications from this condition. Only 1% of fetuses survive birth.
The bill in its Senate version, SJR 64, co-sponsored by Senators Jennifer Beck, Robert W. Singer, and Nellie Pou was introduced to the Health, Human Services, and Senior Citizens Committee last October and passed in its second reading on February 4, 2013. What became an issue was having the bill read at a general Senate meeting. Kym Hall, patient advocate for the foundation, was unrelenting in her efforts and was continually in contact with aides at Senate President Stephen Sweeney’s office while also getting in touch with staff in Governor Christie’s office.
It seemed like nothing could get through to Senator Sweeney’s office and one report revealed that he was in a dispute with Senate majority leader Tom Kean. Was this the reason why the bill wasn’t making it to the Senate general meeting? Political dispute certainly seemed to be hindering the posting of this bill.
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August 19 was a major day for Turner Syndrome in New Jersey as AJR65 passed unanimously through the state Senate. The foundation was very grateful to all of the legislators who helped make this day a watershed moment for girls and women affected by this complex condition and those who have not been diagnosed yet.
To have the bill signed by Governor Christie was a major effort and there was a national call for advocacy in a letter to governors in every state. There were numerous requests for advocates to write, visit, or call their local representatives and provide testimony about the importance of this bill.
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The mission of the Turner Syndrome Foundation is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner Syndrome. As an advocacy organization, the foundation provides resources to its constituents through its website, www.turnersyndromefoundation.org; newsletter; social media; and news articles. Hundreds of letters were mailed to assemblymen and senators appealing for their support in passing this important piece of legislation.
As an advocacy group, it is a collective effort as one team, one voice, for the sole reason to improve the identification and treatment of babies who survive Turner Syndrome. If you would like to become an advocate apply to join the National Council of State Leaders and act as a representative for your state. The foundation has been dedicated to advocacy since its inception and will provide tools, training, and tips for successful efforts across the United States. For more information, go to http://www.turnersyndromefoundation.org/state-resources.html or call 732-847-3385.
