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Monthly Archives: October 2013

Home/2013/October

The 3rd Annual Walk for Faces of Fragile X

By |2013-10-23T13:01:08-04:00Oct 23, 2013|Fundraiser, Northeast Kansas|

“The walk just keeps getting bigger and better every year!” This was a comment made by the mom in one of our families who drives more than three hours to attend the Walk for Faces of Fragile X in Kansas. She was particularly excited this year because her brother and his family joined them at the walk. That’s what it’s all about: families and their communities coming together to raise awareness, foster acceptance and see that we are not alone on this sometimes daunting journey.

With Seaside and STX209 in Our Rearview Mirror, What’s Next?

By |2013-10-10T17:40:08-04:00Oct 10, 2013|Advocacy, Advocacy Day, Seaside STX209|

The official result of the Seaside trials was that STX209 did not do what its makers thought it would. The present structure of FDA trials requires that the proponents of a new drug predict what it will do and then conduct trials to determine whether the drug delivers the predicted results. If it does not, that particular trial is deemed a failure and cannot be relied upon to make the case for formal approval of the drug.

St. Louis' Annual Mouse Races

By |2013-10-02T16:40:32-04:00Oct 2, 2013|St. Louis|

There is something to be said about unique thinking, especially when fundraising can be so challenging. Creating a signature event in your community takes time, patience and creativity. Thankfully, our group leaders have all of those qualities, including the Fragile X Resource Center of Missouri who just held their 8th Annual Mouse Races. Yes, you read that correctly: mouse races!

Fundraisers: 3rd Annual FX Golf Outing in SW Chicago

By |2013-10-02T10:14:17-04:00Oct 2, 2013|Fundraising, Greater Chicago|

We are frequently amazed and humbled by the enthusiasm that so many members of the Fragile X community demonstrate when they take a big idea and turn it into a successful reality. Two of these remarkable people are Missy and Mark Zolecki of Plainfield, Illinois. Missy and Mark, along with Gail Harris-Schmidt, lead the Fragile X LINKS Group of Greater Chicago. The group’s goals include...