IV 

111TH CONGRESS 

1ST SESSION H. RES. 611 

Supporting the goals and ideals of ‘‘Fragile X Awareness Day’’. 

IN THE HOUSE OF REPRESENTATIVES 

JULY 7, 2009 

Mr. HARE (for himself, Mr. DELAHUNT, Mr. HARPER, and Mr. BILBRAY) submitted the following resolution; which was referred to the Committee on 

Energy and Commerce 

RESOLUTION 

Supporting the goals and ideals of ‘‘Fragile X Awareness 

Day’’. 

Whereas fragile X syndrome is the most commonly known 

cause of inherited mental impairment in the world; 

Whereas an expansion of the CGG trinucleotide repeat in the 

FMR1 gene—a human gene that codes for a protein 

called fragile X mental retardation protein—causes almost all cases of fragile X syndrome; 

Whereas fragile X mental retardation protein is normally 

made in many tissues, especially in the brain and the testes; 

Whereas fragile X mental retardation protein may play a role 

in the development of synaptic connections between nerve 

cells in the brain where cell-to-cell communication occurs; 


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•HRES 611 IH 

Whereas there is a unique relationship between fragile X syndrome and autism; 

Whereas fragile X syndrome is the most commonly known 

single-gene cause of autism; 

Whereas up to one-half of all children diagnosed with fragile 

X syndrome also have autism or an autism spectrum disorder; 

Whereas over 100,000 people in the United States have fragile X syndrome and over 1,000,000 people in the United 

States carry a fragile X mutation and have or are at risk 

of developing a fragile X-associated disorder; 

Whereas fragile X-associated disorders include fragile X syndrome, which causes language, behavioral, and developmental disabilities; fragile X-associated tremor/ataxia 

syndrome—an adult onset progressive neurological condition causing tremors and balance and memory problems 

primarily in male carriers that can lead to decreased life 

expectancy; and fragile X-associated primary ovarian insufficiency—a cause of infertility, early menopause, and 

other ovarian problems in female carriers; 

Whereas doctors can accurately identify and diagnose fragile 

X syndrome, fragile X-associated tremor/ataxia syndrome, and fragile X-associated primary ovarian insufficiency; 

Whereas the National Institutes of Health is currently funding a study that will lay the groundwork for screening of 

all newborns in the United States for early detection of 

the fragile X mutation; 

Whereas increased research into fragile X syndrome can lead 

to a better understanding of the disorder, more effective 

treatments, and an eventual cure; and 


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•HRES 611 IH 

Whereas advocacy organizations have designated July 22 as 

‘‘Fragile X Awareness Day’’: Now, therefore, be it 

1 Resolved, That the House of Representatives— 

2 (1) supports the goals and ideals of ‘‘Fragile X 

3 Awareness Day’’; 

4 (2) supports raising awareness and educating 

5 the public about fragile X syndrome and associated 

6 disorders; 

7 (3) applauds the efforts of advocates and orga8 nizations that encourage awareness, promote re9 search, and provide education, support, and hope to 

10 those impacted by fragile X syndrome; 

11 (4) recognizes the commitment of parents, fam12 ilies, researchers, health professionals, and others 

13 dedicated to finding an effective treatment and cure 

14 for fragile X syndrome; 

15 (5) urges all physicians, health care providers, 

16 and specialists to— 

17 (A) learn the clinical signs and symptoms 

18 of fragile X syndrome, fragile X-associated dis19 orders, fragile X-associated primary ovarian in20 sufficiency, and fragile X-associated tremor/ 

21 ataxia syndrome; 

22 (B) use diagnostic, developmental screen23 ing, and surveillance modalities to detect fragile 

24 X-associated disorders; 


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•HRES 611 IH 

1 (C) test, when appropriate, individuals ex2 hibiting signs of developmental delay or an au3 tism spectrum disorder to determine the status 

4 of their FMR1 gene; 

5 (D) gain a full understanding of the ge6 netic implications of all fragile X-associated dis7 orders, and when appropriate, make a referral 

8 to a geneticist or genetic counselor to assure 

9 that affected individuals and their families are 

10 aware of how a fragile X-associated disorder 

11 may impact their extended family; and 

12 (E) provide patients diagnosed with fragile 

13 X-associated disorders with supplemental infor14 mation maintained by the Centers for Disease 

15 Control and Prevention, the National Institute 

16 of Child Health and Human Development, and 

17 private foundations such as the National Frag18 ile X Foundation and the FRAXA Research 

19 Foundation; 

20 (6) encourages all private and public health in21 surance entities to provide full coverage for screen22 ing technologies, appropriate followup referrals, and 

23 genetic counseling services related to the detection, 

24 proper diagnosis, and treatment of fragile X-associ25 ated disorders; 


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•HRES 611 IH 

1 (7) recommends that the National Institutes of 

2 Health and related member institutes fully imple3 ment the research plan on fragile X syndrome and 

4 associated disorders developed by the Trans-NIH 

5 Fragile X Research Coordinating Group and Sci6 entific Working Groups; and 

7 (8) supports increased funding for research into 

8 the causes, treatment, and cure for fragile X syn9 drome. 

Æ 


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