Thursday, May 16, 2013

BE The Change

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So much love and support has been pouring in all day from family, friends, even people I don't know.  While this is circulating on Facebook, I want to get a copy here as well.  I don't know what the future holds for Arbaclofen (STX 209), but I know that when this community, my X-Family, comes together we are a force to be reckoned with.  I know we have done all we can for the many that are currently benefiting from this drug, and hopefully the many more that will.

So...what can you do?

1)  Make some NOISE!  Now is not the time to sit by quietly.  NOW is the time for action.

FACEBOOK users:  SHARE SHARE SHARE.  Repost the following blogs:


TWITTER users:  Tweet, tweet, and re-tweet.  Use this message and/or the blog links above.

#WishfulVoting wish Congress was funding #fragileX research so effective meds are available and funding doesn't run out before the FDA approval

2)  Contact your local media.  Call your TV, newspaper, and radio.  Have contacts in other media?  Utilize them.  Call in favors. Pull strings.  Make it happen.  Big or small - each piece matters.

3)  SIGN and SHARE the petition:

4)  Contact your congressmen.

You can find your representative here:
You can find your senator(s) here:

You can click HERE to find the sample letter I used. (many thanks to Melissa for the template!)

5)  DONATE.  Yes, I'm going to shamelessly plug our fundraiser here because let's be honest - every single penny counts.  The National Fragile X Foundation and Fragile X Association of Michigan were key in getting me to Washington DC this year to advocate for this EXACT thing..funding for research.  They will be key in other families returning or attending next year as well and we want to give back.    Mr Awesome and I are hosting an awareness day event/fundraiser in July - and have put the donation site active.  You'll see a link on the side of this blog, but can also donate by going here:

6) Please just keep being amazing.  Your support means so much more than you could imagine.  We few, we family of FX parents are always strong together..but we are even stronger with our extended family, friends and AWESOME network of support.  THANK YOU.  From the very bottom of our hearts.  The outpouring of love today has been nothing short of inspiring.

Finally... Thank you to Holly for putting this list together and Melissa for the letter template she posted earlier today as well.  Your hearts are breaking with the rest of ours and still you both find time to be advocates.  We are one voice, but of you are so often are the megaphone for this community.


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