Kudos to the Fragile X families, notably our NFXF Parent Contact, Darlene Donovan, for secuing a proclamation to declare July 22, 2019 Fragile X Awareness Day in New Hampshire.
Proclamations are a visible way to raise awareness with policy makers, the news media, and others.
If you are interested in working with your governor or local elected official, reach out to Dan Whiting, NFXF Director, Community Impact, at firstname.lastname@example.org.
The “meat” of the proclamation is below (minus the pomp and circumstance).
And, if you live in New Hampshire and are interested in connecting with other Fragile X families, please reach out to Darlene at 603-965-3502 or email@example.com.
FRAGILE X AWARENESS DAY
JULY 22, 2019
WHEREAS, Fragile X disorders are a family of genetic conditions caused by a full mutation of the FMR1 gene; and
WHEREAS, Fragile X syndrome is one of the disorders and is the most common genetic cause of intellectual disabilities, autism, and autism spectrum disorders; and
WHEREAS, there are approximately 100,000 people diagnosed with Fragile X syndrome and over 1.5 million people who are carriers in the United States; and
WHEREAS, in New Hampshire there are 400 people who are diagnosed with Fragile X syndrome or are carriers; and
WHEREAS, the genetic cause of Fragile X syndrome has been discovered and is easily identified through DNA testing, but is frequently undetected due to the recent discovery and lack of awareness about the syndrome; and
WHEREAS, awareness, early diagnoses, treatment, and research are vitally important to those with Fragile X syndrome, their families, and carriers of the gene mutation;
NOW, THEREFOR, I, CHRISTOPHER T. SUNUNU, GOVERNOR of the State of New Hampshire, do hereby proclaim JULY 22, 2019 as FRAGILE X AWARENESS DAY in the State of New Hampshire, and call this day to the attention of all citizens.