Tag Archives: newborn screening

#1min4mito Week 6: Highest Incidence of Metabolic Diseases

Posted on February 20, 2014 by Empowered Advocacy

(please forgive us, we are a few weeks behind and trying catch up!!) This one floors me. Really floors me. As many of you know over the past few years I have become a HUGE advocate for Newborn Screening.  Metabolic … Continue reading →

Posted in #1min4mito, Awareness, Baby's First Test, Mitochondrial Disease, Newborn Screening | Tagged , , , , , , , , , | Leave a comment

Five Hundred Fifty Five Feet

Posted on March 15, 2013 by Empowered Advocacy

Just over a year ago, I received an exciting email notifying me that I was selected to be part of the Baby’s First Test Consumer Task Force for 2012.  What an amazing year it has been… Here is a recap of … Continue reading →

Posted in Advocacy, Baby's First Test, Medical, Newborn Screening | Tagged , , , , , | 1 Comment

VIDEO~10 Fingers 10 Toes 10 Facts about Newborn Screening You need to Know!

Posted on September 30, 2012 by Empowered Advocacy

Today marks the last day of Newborn Screening Awareness Month 2012! We started the month with this post of the 10 Facts about Newborn Screening that every expecting and new parent should know… and we are ending this month on … Continue reading →

Posted in Advocacy, Baby's First Test, Medical, Newborn Screening | Tagged , , , , , , , , , | 6 Comments

Texas Born- Newborn Screening in the Lone Star State: Congenital Heart Defects and Pulse Ox

Posted on September 29, 2012 by Empowered Advocacy

By being part of the Baby’s First Test Consumer Task force, I have had the opportunity to meet some amazing people and parents this past year.  This next story comes through one of those connections and meetings. Though, I have … Continue reading →

Posted in Advocacy, Medical, Newborn Screening, Texas Born | Tagged , , , , , , , , | Leave a comment

Texas Born: Newborn Screening in the Lone Star State: 3MGA type 1

Posted on September 28, 2012 by Empowered Advocacy

I had the pleasure of meeting Audrey and her 2 adorable son’s a few months ago when we held a Mitochondriya’ll social/fundraiser at Sweet Tomatoes for Mitoaction.org.  At that time, Audrey had found my blog because her neurologist was suspecting … Continue reading →

Posted in Advocacy, Genetics, Medical, Newborn Screening, Texas Born | Tagged , , , , | Leave a comment

Texas Born~Newborn Screening in the Lone Star State: SCID (Severe Combined Immunodeficiency)

Posted on September 27, 2012 by Empowered Advocacy

I recently had the opportunity to virtually “meet” Jennifer Garcia, an amazing mom on a mission. This is her story of her son, Cameron, and his battle with Severe Combined Immunodeficiency (also known as the “Bubble Boy Disease“). I am … Continue reading →

Posted in Advocacy, Genetics, Medical, Newborn Screening, Texas Born | Tagged , , , , , | Leave a comment

Texas Born: Newborn Screening in the Lone Star State ~ PKU

Posted on September 25, 2012 by Empowered Advocacy

Our family met Caroline and Elizabeth shortly after we moved to the town we now live in, nearly 5 years ago. These 2 gals became our babysitters for Big Boy B before Lady A came along. I knew very little … Continue reading →

Posted in Advocacy, Genetics, Medical, Newborn Screening, Texas Born | Tagged , , | 3 Comments

Texas Born: Newborn Screening in the Lone Star State~ Krabbe Disease and PKU

Posted on September 24, 2012 by Empowered Advocacy

This is an “interview” with Bill Morris. Bill and I met as part of the Baby’s First Test Task Force. Bill and his family lives in Central Texas and Bill serves as the Newborn Screening Advisory Committee Chairperson for Texas. I … Continue reading →

Posted in Advocacy, Genetics, Medical, Newborn Screening, Texas Born | Tagged , , , , , , , | 1 Comment

What does Newborn Screening have to do with Mitochondrial Disease?

Posted on September 17, 2012 by Empowered Advocacy

Great Question! About a year ago as I was learning more and more about mitochondrial disease… I began asking myself, if Lady A’s symptoms were present since 2 weeks of age, is there (or was there) ANY way that we … Continue reading →

Posted in Advocacy, Baby's First Test, Medical, Mitochondrial Disease, Newborn Screening, UMDF | Tagged , , , , , , , , | 7 Comments

United Mitochondrial Disease Conference 2012~ Washington D.C.

Posted on June 8, 2012 by Empowered Advocacy

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 … Continue reading →

Posted in Advocacy, Autism, Medical, Mitochondrial Disease, Newborn Screening | Tagged , , , , , , , | 2 Comments