Tuesday, March 6, 2012
I’m happier then I have been in a long time. Figured I should document the day with an update.
Just got off the phone with our partner in crime, Paul Burke of the JLK-Sanfilippo Research Foundation. Thanks to JLK our science is expanding, well our scientist Alexey had a lot to do with it too. JLK just funded Alexey’s new project.
I feel calmer... sigh of relief. The project is a few years out and it’s never a for sure that Alexey’s hypothesis will work out. But I have hope and no matter what our understanding of the disease will be better understood.
Our trip to DC was phenomenal! I can really get into this lobbying gig, Jeremy, Jonah and I made lots of new friends. (Jonah was the only kid that showed up.) RDLA set me up with several interviews with staffers from congress and the senate. I actually met with my districts Congresswomen Nydia Valezquez in person. Senator Wyden (OR) was scheduled to show for our meeting, but I guess he had to go vote or something, his staffer was very supportive though. The whole point of the trip was to educate the House and Senate about HR 3737 aka the ULTRA-act. Our group of parent advocates were signed up to talk to representatives from their districts. I got to see all the representatives from my area. We were all very well received and our Rare Disease-lobby day was a complete success. In honor of Rare Disease Day, conferences were held at the FDA and NIH. Jeremy and I took turns going to meetings, while the other hung out in DC with Jonah. We also had and interview with CBS while in DC, some of you might have caught the clip of our interview it was shown in several major cities. Here is a clip.
Sunday we have our first annual walk at Prospect Park. I’m surprisingly calm about the event. The date was not easy for me to secure but I won’t bore you with the details. It’s going to be a very pleasant and easy going day at the park. The weather is going to be beautiful! We have a guest of honor coming. Camilio from Queens (MPSIIIC) is coming, we look forward to meeting him in person. Hopefully one of our congress representatives will come, but I won’t hold my breath. Regardless next years event is going to be off the hook, now that we’re in we have the date forever.
See all of our Brooklyn peeps Sunday. To register for the walk click here.
To sponsor the Wood-Weishaar family click here. For those of you that are walking, there's still time to create a Cause WISH. This is a fun and easy way to hit up your friends and family for sponsorship. Will you walk with us video.