The Griffin Adventures: Goats, Music and More Festival

Thursday, September 23, 2010

Goats, Music and More Festival

Dear friends and family,

We will be in Lewisburg, TN the second weekend of October for the Goats, Music and More Festival with our Lucky Buck Jewelry and our "Who's Brody?" booth. Please come say hello and help us to advocate for Fragile X and Autism. Brody is doing great and I hope to have him at the booth on Saturday. Millo will be with us if the weather is cool and I would love for everyone to see Ian and Atlee and how much they have grown.

Spirits are high here and all is well in Alabama. The kids are very happy in their school and we have done away with TV during the school week which is working well for family time and homework. We are getting a makeover at our house soon by a couple of friends of mine from church. They want to provide Brody with some sensory and vestibular input in his room. How cool is that?

Please continue to pray for our family and the "experiment" we are doing with the re-invention of family. It has been both challenging and rewarding to make the changes we have and we only look forward to the future.

Love and blessings,

Wendy

P.S. Had a few changes since moving here in my hair.

1 comment:

carol said...: Look forward to seeing everyone!; September 23, 2010 at 8:04 PM

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The Top Ten Things You Should Know About Fragile X Syndrome

By Mary Beth Langan and Sally Nantais

1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and PCR analysis. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:http://www.fragilex.org/, the National Fragile X Foundationhttp://www.fraxa.org/, Fraxa Research Foundationhttp://www.conquerfragilex.org/, Conquer Fragile X Foundation** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html
Mary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. They can be contacted at mblangan@hotmail.com and sally_nada@juno.com