The National Fragile X Foundation released it’s new logo family today. It is a big change and I am loving it!
Here is the bragging part, my husband did the animation/reveal. Please go check it out on the home page:
National Fragile X Foundation
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Tomorrow, July 22nd, is Fragile X Awareness Day. I thought I’d take a minute to share what I wish the general public knew about Fragile X Syndrome. It exists. It may be in your family. You won’t know unless you’re tested. If you are planning to have a baby and you are offered genetic . . . → Read More: What I want you to know about Fragile X Syndrome. Monkey’s fever has broken but that cough, ugh. Because of the medications he’s on he cannot take cough suppressants either. I just went into his room to set up the Vicks Waterless Vaporizer1 and his little face just lit up. I hope it lives up to his high expectations and he gets some rest . . . → Read More: *Cough*hack*Cough* This is EVERYWHERE right now, I love it! Experiment takes aim at genetic learning disorder – The Boston Globe Posted using ShareThis I’ve started a list of resources, links, therapies & supplements that I’ve heard about from other members of the Fragile X community. You can visit it here: Resources, Links, Therapies & Supplements There is a link to it over to the right as well. You need party favors, I know you do! Check out the site PrettyFavors.com (there is a handy link over there on the right in the sidebar.) All proceeds benefit Fragile X research and awareness! There are some really cute things available! Gene therapy makes major stride in ‘Lorenzo’s Oil’ disease In the third gene-therapy success of recent weeks, French researchers have arrested the progression of the rare and fatal degenerative disorder adrenoleukodystrophy, which was at the heart of the popular movie “Lorenzo’s Oil.” The disease has stabilized in two boys who were 7 years old . . . → Read More: Not directly FX related but it has potential. See here for the official release. Clinical Tests Begin on Medication to Correct Fragile X Defect NIH-supported scientists at Seaside Therapeutics in Cambridge, Mass., are beginning a clinical trial of a potential medication designed to correct a central neurochemical defect underlying Fragile X syndrome, the most common inherited cause of intellectual disability. There has . . . → Read More: Clinical Tests Begin on Medication to Correct Fragile X Defect This is a very hot topic right now, you can read great pieces here and here. I just wanted to toss in my two cents. I feel incredibly disappointed by the actions of American Express. I understand that tucked away in their FAQs they explained that voting was only going to matter for the . . . → Read More: The American Express Member’s Project debacle. |
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