United Mitochondrial Disease Conference 2012~ Washington D.C.

For this stay-at -home- mom… I sure haven’t been staying home much these past 2 months. Next week, I will head to Washington D.C. for the 2nd time! I was just there 3 weeks ago with the Baby’s First Test Task Force and SACHDNC meeting! This time I will be headed to learn all I can about mitochondrial disease and spread some awareness (as part of my www.babysfirsttest.org  project) about newborn screening.

I will be going early to attend the Scientific Meetings, the theme is:

 “From Genomics and Systems Biology to Translation “

I will also be doing some advocating while I am there… with the “Day on the Hill” event that I signed up for. The UMDF is coordinating congressional meetings for families to advocate for research funding for mitochondrial disease.

On Friday and Saturday, I will attend some of the “Family Sessions” which include panel discussions with mitochondrial experts from around the country as well as an “Ask the Doc” session and a “Doctor Is In” opportunity to sit down for 15 minutes with a doctor and ask questions.  I am looking forward to meeting some moms I have connected with on-line and spending time with those I have met in person.  I look forward to meeting some of the doctors we have consulted with but have not had the chance to meet in person yet.  But most of  all I look forward to the knowledge that will hopefully bring us closer to an answers and treatments for Lady A.

I plan to share as much of the knowledge that I gain from this experience. In the mito community I know that it is not always feasible financially or medically to make it to these types of meetings, so it is my hope to share the knowledge that I gain with those who may need it most, those of you that cannot attend.  I will be twittering and facebooking (hopefully!) from the meeting and will try and use the tag #UMDF2012 so you can follow along.  I will also try and blog a summary post when I get back from the meeting (after a detour for some family fun in Florida!)

If you are going to the meeting, please do stop and introduce yourself and say hello ( I will be helping at the MitoAction booth on Friday in the morning)! And PLEASE ASK ME for a FOOT…. (??? more details coming soon….) 🙂

The journey of a thousand miles, begins with one (baby) step…


About Empowered Advocacy

www.EmpoweredAdvocacy.com Pediatric Patient Advocate
This entry was posted in Advocacy, Autism, Medical, Mitochondrial Disease, Newborn Screening and tagged , , , , , , , . Bookmark the permalink.

2 Responses to United Mitochondrial Disease Conference 2012~ Washington D.C.

  1. tguidry says:

    I’m so jealous! I wish I could go. But between Reagan and her new brother, thats hust not going to happen! Maybe next year!?!?!

  2. Amy B. says:

    Yay! Thanks so much! I cannot wait to read your posts! 🙂

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