Monthly Archives: March 2016

Happy Spring

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Strolling in the springtime

Strolling in the springtime

Lily and I are so excited that the flowers are starting to bloom!  It fills us both with so much excitement and hope.

Here are a few Rett related things that have also been inspirational to me over the past few months that I wanted to share:

  •  Moving video about living with a child with Rett Syndrome
  • The Today Show piece on Rett Syndrome
  • The scientist who discovered the genetic marker for Rett Syndrome is coming to NYC (and I’m already signed up to see her speak)
  • An upcoming Rett fundraiser in NYC where I’ll get a chance to catch up with some of my awesome Rett momma friends (and for those of you in the NY area – would love for you to join me!)
  • An announcement from RSRT about the $9mm that was awarded last year to research (psst some Rett momma friends and I are getting together to brainstorm on how we can double that number for 2016)

I hope to see some of you at the fundraising event next month!

Love,

C and L

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Rare disease day

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Yesterday was rare disease day.  It was also my great-grandmothers birthday; she would have been  124 (or 62 if we got literal about the actual day – which always fascinated me when I was a kid). I posted about both on Facebook but didn’t get the opportunity to blog in time. (Gives you an indication of how hectic it’s been).

What was particularly fitting about yesterday and rare disease day was that I had my annual check in with my special needs estate planner/attorney. My heart is always heavy at these meetings. The lawyer is a lovely person – he is kind and even generous (I got the single momma discount yesterday for setting up yet another trust, this one for my retirement funds). But the topics we discuss are all very morose.

Regardless, it was a good day. I got home in time to cuddle with my sweetie and even managed to read a little before passing out.

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