Tag Archives: awareness

Rare Disease Day Festivities

1 Mar

Whooo has a rare disease?  

I do. It’s not really that rare in this country, it’s just that we don’t routinely screen parents prenatally (they didn’t check for it in the two rounds of genetic counseling I went through, having nearly zero family medical history, and hahahahahahhahahah, of course I have mutations from both sides of the gene swamp.  The universe is a $&@!ing comedian.) and worse, only two states in the US routinely screen newborns.  For the love of Pete!

This is wrong wrong wrong wrong wrong.

So, here’s how we can make the medical establishment pay attention (that isn’t as likely to get us hauled in like my previous plan to flash my pale, porcelain white boobies while holding up an anti-legume placard to illustrate that not only darker skinned males, but also pasty females, can have this disorder. Don’t fret, my dears,  I’m not flashing anyone (not on purpose, anyway. Sorry about the other day, new neighbors across the way).)

In honor of all of those living with Rare Diseases, please (PLEASE PLEASE PLEASE PLEASE) consider signing the petition over at G6PDDeficiency.org.

Dale Baker, the force behind the site and a lifesaver, is collecting signatures to present to hospitals and physicians to super-emphasize what all of us know, that routine newborn screening will save lives.

It will take you just a minute, but it can save lives and make all of our communities healthier. After you sign, or even if you don’t sign, please consider tweeting a link to the petition or this blog post. Awareness is powerful. Thank you. Thank you.

Thank you.

You are the best.
G6PD Deficiency Newborn Screening Petition

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ADDitudes…

14 Sep

It’s ADHD awareness week… (ADD is grouped in with ADD…Even for those of you that definitely lack the “H”)..

There are many, many fabulous resources in cyberspace covering many different aspects of ADHD…From many different angles…

One of the best jumping off points for info on living (as a person with it, or a person with ADHD kids, or spouse, etc) with it can be found at ADDitude

Another great resource is CHADD but for me ADDitude is much more anecdotal, accessible, and informative for my learning style and our family issues (all three of us have ADHD/ADD…You probably knew that about me just by reading my blog- even the non-ADD specific entries!)…    I do use any and all resources I can get my hot little hands on though…

Oh and ADDitude has some wonderful printables to help with organization/scheduling/practical stuff as well as fact/suggestion sheets on many topics within the scope of ADHD/ADD…

International Ataxia Awareness Day

25 Sep

Today is International Ataxia Awareness Day.

Never heard of Ataxia? I had never heard of it either, until I met Auntie Patti.

Ataxia is a slow moving and unstoppable thief.

As a bystander, you feel powerless.

We aren’t totally powerless.

Please take 5 minutes today to read up here:

Ataxia Fact Sheet

Ataxia.org

Wikipedia’s easily digestible info on Ataxia is here:

http://en.wikipedia.org/wiki/Ataxia

Sadly and tragically, Auntie Patti passed away a week ago today. To promote and assist further research please consider a donation to the National Ataxia Foundation are appreciated – if you would like to make a donation of any size you may do so here

(if you do donate please select “research giving” and “sporadic ataxia” in the drop down menu… Please consider donating in memory of Patricia Benyo. Thank you.)

*hugs*

B

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