Follow by Email

Monday, September 10, 2012

What an awesome day!

What an awesome day.

Fall is in the air, it’s cool outside.  Dropped Jonah off to hie first day back at school.  He has a new classroom and teacher.  8 of the 12 kids from LY are in his class.  He was a bit apprehensive at first, but he ran in and said hi to all of his friends.  He gave me a great kiss and hug goodbye.

I woke up to a ton of votes on our CHASE Community Giving.  We had the highest voting day so far. Yesterday I went from parent to parent at the playground, passing out flyers and asking for votes.  I tell yeah, having to tell a stranger that your child has a fatal genetic disease is gut wrenching-tear jerking stuff.  I had to take a deep breath and leave the park.  I gave myself a pep talk and headed back in.  It worked though we got a bunch of votes.

If anyone wants to help me out with our guerrilla campaign- passing out flyers on the street and asking for votes... Let me know and I’ll get you a bunch of take away flyers.
We’re struggling to keep our $50,000 payout rank.  We need to be placed at #46 to win $50,000.  The top prize is $250,000 and the following 9 are $100,000 payouts.  We could get into the top ten if everyone voted and spread the word.

In other good news.  Jonah and I will be going to California at the end of the month.  I have been invited to the Global Genes gala and summit.  I’ll be speaking on one of the panels.  The organizers were in love with the pic’s that Dodi took of Jonah while in OR, their blowing one up as a poster.  There will be hundreds of who’s who is the rare disease community there all looking at my adorable boy.

I was also nominated  for an award for the Leadership in Advocacy presented by the Association of University Centers On Disabilities.  They’re a network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families and communities.  Not sure what happens if I win it, funding would be nice.  However the nomination itself is an honor.

I submitted a poster to be presented at the NORD/DIA conference.  I hope it’s accepted.  Since my first conference I wanted to have a poster for one of the poster sessions flanked by scientific posters presented by PhD’s.  We also applied to speak about Phoenix Nest-JJB-ODDT and the Partnering for Cures conference.  I’m pretty sure we’ll be accepted for that conference.

Lots of exciting stuff going on.  Most importantly, Jonah is happy and healthy.  Back to work.  I’m absolutely obsessed with winning a huge grant from CHASE.  SO pretty please vote for Jonahs Just Begun and Sanfilippo Research Foundation.  You only have to vote once and you only vote for 2 charities.... Unless you have a CHASE account then you can vote 2 more times!

Just follow the links:
Jonahs Just Begun
Sanfilippo Research Foundation
p.s. VERY IMPORTANT.  Remember to promote.  Once you cast your vote hit like and send to all of your friends!

Thanks in advance,
JJB/Jill