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Title:
Heart of Glenview 2009: FNMS (Foundation for Nager and Miller Syndromes)
Description:
FNMS mission is to guide families through the process of surviving to thriving. Who better than another experienced parent to assist the newcomer? This parent volunteer organization has been in existence for 18 years. FNMS services include a multi-resource and informational network among health professionals and affected families, host a 1-800 number for phone support, provide scholarships to CAMP ABOUT FACE summer camp, host a mighty website, distribute FNMS brochures worldwide, access to a medical advisory board, publish newsletters, and provide travel scholarships to those wishing to attend FNMS biannual International Family Conference. FNMS gives financial assistance to a parent and their affected child to attend conferences. Connections made here help move one from loneliness and isolation to places of understanding and acceptance. Positive transformations occur at family conferences, and only FNMS provides this unique environment and opportunity. About the syndromes, Nager/Miller syndromes are two extremely rare, yet similar genetic conditions. Both cause severe cranio-facial and limb abnormalities, and both experience medical, emotional, and physical challenges. Starting at birth and continuing into adulthood is the need for multiple reconstructive surgeries. Surgeries are necessary to improve one's ability to breathe, eat, hear, see, walk, speak and write. Ongoing physical, occupational and speech therapies are also needed. Equally important to physical treatment is the need for psychosocial care to address the challenges of living with disfigurement in todays society.
Author:
HeartOfGlenview
Tags:
fnms, Foundation, for, Nager, and, Miller, Syndromes, heart, of, glenview, giving, video, 2009, taste, illinois, 2010, charity,
Heart of Glenview 2009: FNMS (Foundation for Nager and Miller Syndromes)
Description:
FNMS mission is to guide families through the process of surviving to thriving. Who better than another experienced parent to assist the newcomer? This parent volunteer organization has been in existence for 18 years. FNMS services include a multi-resource and informational network among health professionals and affected families, host a 1-800 number for phone support, provide scholarships to CAMP ABOUT FACE summer camp, host a mighty website, distribute FNMS brochures worldwide, access to a medical advisory board, publish newsletters, and provide travel scholarships to those wishing to attend FNMS biannual International Family Conference. FNMS gives financial assistance to a parent and their affected child to attend conferences. Connections made here help move one from loneliness and isolation to places of understanding and acceptance. Positive transformations occur at family conferences, and only FNMS provides this unique environment and opportunity. About the syndromes, Nager/Miller syndromes are two extremely rare, yet similar genetic conditions. Both cause severe cranio-facial and limb abnormalities, and both experience medical, emotional, and physical challenges. Starting at birth and continuing into adulthood is the need for multiple reconstructive surgeries. Surgeries are necessary to improve one's ability to breathe, eat, hear, see, walk, speak and write. Ongoing physical, occupational and speech therapies are also needed. Equally important to physical treatment is the need for psychosocial care to address the challenges of living with disfigurement in todays society.
Author:
HeartOfGlenview
Tags:
fnms, Foundation, for, Nager, and, Miller, Syndromes, heart, of, glenview, giving, video, 2009, taste, illinois, 2010, charity,
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