Earlier this week I had the opportunity to fly to New York for a newborn screening meeting with an organization called NYMAC; New York Mid-Atlantic Consortium on Genetic Services and Newborn Screening.
Yeah. Long name!
They had invited me to represent WV and to present my "expertise" on pulse ox, passing the bill, and my knowledge about social media and the power it has for advocates like myself. I was so excited to share my knowledge and talk to others who are as passionate about newborn screening as I am.
I had to drive almost two hours to the airport then head to DC, then up to Albany. Both flights were smooth and not too much turbulence. The hotel was 5 minutes from the airport, and they provide a shuttle, which I really appreciated. Taxi fare can get pricey!
The hotel was very warm and inviting with what I can only call a old British feel. Very cozy.
After I got settled in and the rest of our group arrived, we set off for dinner at P.F. Changs. It was my first time to the restaurant and I told the other advocates that every time I travel, I feel like such a small town girl! We don't have this at home!
Dinner was delicious! Sadly, at this point, I lost the rest of the pictures I took with my camera so I can't show you the amazing food I had, or the trip home. :(
But I will tell you, if you ever have the chance, stop by that place, it is so worth it!
During dinner, I got to meet my fellow work group members and talk more about my story. The woman sitting next to me had lost her son 11 years ago to Trisomy 18, and then started an organization to raise awareness of the disorder and help other families.
To chat with others about my passion really warms my soul. I can feel Corbin's spirit there as I am advocating for him and his cause. This is what I am meant to do. This is what I want to do for the rest of my life and nothing would make me happier then to be able to do that!
Our meeting started early the next morning and lasted till late afternoon. We covered a lot of ground, got stuck in a confusing conversation for a bit, but then made a lot of progress once we got over that hurdle. Since we were all asked there to help NYMAC reach their audience better, I presented my project for spreading their social media impact and to work on more awareness of the organization and education about what they do. I can tell there is a lot of work to be done, but I am excited and willing to help!
Some more amazing people you should know:
Hunter's Hope
"Hunter’s Hope was established in 1997 by Jim Kelly and his wife Jill, after their infant son, Hunter (2/14/97—8/5/05) was diagnosed with Krabbe Leukodystrophy, an inherited fatal nervous system disease. "
Website: www.huntershope.org
Twitter: @HuntersHopeFDN
Facebook: https://www.facebook.com/HuntersHope
Trisomy 18 Foundation
"Our Mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring worldwide community for affected families."
Website: www.trisomy18.org
Twitter: trisomy18
Facebook: http://www.facebook.com/trisomy18
