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The NFXF Blog

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What do you love about Fragile X?

By |Feb 7, 2018|

[mpc_textblock content_width="100" font_size="16" font_line_height="1.7" margin_divider="true" mpc_tooltip__border_divider="true" mpc_tooltip__padding_divider="true"] At first, that might sound like a strange question. But, love is someone or something that touches you in your deepest place and warms your heart. Fragile [...]

Congress Passes the RAISE Act

By |Jan 10, 2018|

Last night, Congress passed the RAISE Family Caregivers Act. The bill, introduced by Fragile X Caucus co-chair and parent, Rep. Gregg Harper, directs the Secretary of HHS to work with stakeholders from state and local [...]

Fishing for a Cure

By |Jan 9, 2018|

Joey Christoff’s son, Mitchell, has Fragile X syndrome, and his wife and mother-in-law are carriers at risk of Fragile X-associated disorders. Caring for them and giving hope to other families is what drives Joey [...]

Participate in Market Research Opportunity

By |Jan 8, 2018|

The NFXF is looking for 10 parents of children with a diagnosis of Fragile X syndrome, including both males and females, from all over the country, to participate in a market research opportunity related to [...]

Assessment of Glutamatergic System in Fragile X syndrome

By |Jan 3, 2018|

Massachusetts General Hospital A research study at Massachusetts General Hospital The Massachusetts General Hospital Martinos Center is looking to enroll males with Fragile X Syndrome (FXS), 18 years of age or older, for a [...]

Fragile X Pumpkin Carving Contest

By |Oct 26, 2017|

The First Annual Fragile X Pumpkin Carving Contest is here! The mission is to raise awareness of Fragile X by carving the NFXF X into a pumpkin and displaying it. The details: Carve a pumpkin [...]

Where is the Hope?

By |Oct 24, 2017|

Getting a diagnosis is hard. It’s really hard. There has been nothing else like it in my life and I cannot imagine there ever will be. It made me sad … really sad.