April 24th fundraising event for Rett Syndrome – will YOU be there?

Hi family and friends,

It’s been a challenging few weeks for me.  That last hospital visit really took the wind out of my sails.  I’ve been struggling with a cold/cough/exhaustion for a while now.  But I’m doing my best to stay healthy.  I even started putting bentonite clay in my water for additional minerals and support (you may think I’m crazy but it is helping me).  I need all the energy I can get to keep up with Lily, who is being VERY opinionated and active these days.  She is SUCH a toddler.  But all of this is excellent, excellent news.

She and I have been doing a lot of reading (‘The Wheels on the Bus’ is her current favorite book) and her word approximations are mind-blowing.  Yesterday she said ‘horsie’, ‘piggie’, ‘birdie’, ‘ready’, ”ommy’ (for mommy), ‘omlette’, ‘berry’ ‘bay’.  Mind-blowing.  This kid is going to talk.  I am convinced of it.

The other thing which has been keeping me busy (on top of work, managing Lily’s calendar and giggling with Lily) is helping to organize Rett fundraisers… (You all know that I’m eventually getting on the board of either the IRSF or the RSRT one of these days!).  Here are a few upcoming events which I’m putting my energy behind:

Reach for the Stars‘Reach for the Stars NYC’, taking place in TriBeCa on April 24th. From the Team Lily contingency, I will be there, as will Grandma (who is making a guest appearance from Florida), Leslie (one of my besties from grad school who is coming from Toronto on her way back to DC) and a slew of other friends. It should be a lovely evening – cocktails and canapés at a beautiful venue. If you’re in the NY metro area, I’d LOVE to see you there. You can either view the invitation to the left or click here.

‘Strollathon Hoboken is taking place on October 5th and I’m gathering a team of work colleagues (to get my Company’s financial support), family and friends to come and walk to raise funds, and awareness of Rett Syndrome.  FYI – we may be organizing a Team Lily family and friends party after the walk.  More soon on this (I’m in the process of creating a webpage for the event)!  For you relatives outside of the NY metro area, put this date in your calendar!

‘Reverse Rett NYC’ is taking place at Capitale in Manhattan on November 3, 2014.  I have a meeting with the executive director or the Rett Syndrome Research Trust this week and it’s likely I’ll be a member of the organizing committee.

I really do hope to see you at any one of these upcoming events.  It would mean so much to me, and to Lily.

Sending love and joy (and a few pics from over the weekend),

C & L

the Janis Joplin look (the 60's), the bobby sock look (the 50's), and the valley girl look (the 80's)

the Janis Joplin look (the 60’s), the bobby sock look (the 50’s), and the valley girl look (the 80’s)







2 thoughts on “April 24th fundraising event for Rett Syndrome – will YOU be there?

  1. Hey Bella –
    Posting my question here in case others have a similar thought, but for those of us who are unable to attend any of the events but still want to make a donation, what is the best way to do so? Do you want us to send a $ amount to the org in your/Lily’s name, or is it better to just send you a check so that you can pool all of our donations into one larger donation that comes directly from you, thus helping ‘leverage’ your visibility as a future awesome board member? Happy to do either way, so let me/us know your preference and we’ll support you accordingly.

    Sending you both virtual hugs and lots of strength.
    Much love,

    • Jill! What a great question. If you are making the donation, you should get the tax refund! BUT likely I will ask you to pledge it in honor of Lily. I’m still trying to figure out if I want to do more with the IRSF or the RSRT as both are great orgs (and work together). I’m likely going to partner with the RSRT… More soon on this!


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