Tag Archives: advocacy

The Promised Pictures

We had a lot of fun at the March of Dimes Signature Chef’s Auction. We feasted on delicious dishes and met some incredible people.

As usual, Charlie flirted shamelessly. Charlie seems to really enjoy interacting with people.

In the beginning of the evening, she handed out the favors and we thanked people for attending. Later, she tossed the football back and forth with attendees while a football package was auctioned off (and continued on with it past the sale of the item).

As promised, here are some of the pictures from this weekend.

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Something Good Today

Today, I had the privilege of speaking to first year medical students about our micro preemie experience. I was impressed with how thoughtful and intelligent their questions were.

Mostly, I was happy to be there and for others to learn from our story. It is an instance of something good (other than Charlie) coming from the circumstances of Charlie’s birth.

When Charlie’s early arrival was imminent, I was asked to participate in research by donating my placenta and providing blood samples from me, my husband, and Charlie. I readily agreed.

At the time, I needed to believe something good could come from our tragedy. I believe in the importance of research and it seemed like a small way to help others.

Now, I still feel the need for good to come out of our situation. I feel the initial good continues when I speak or allow others to learn from our case. However, my motives are not entirely altruistic.

Each time I tell our story, it gets easier to tell. Our reality becomes less of a shock to me. Each time I talk about it, it normalizes things for me. The words flow easier and are not as hard to find.  Each time I say it out loud, I process it a little more and gain a better understanding.

If there are questions, I think about different aspects that I hadn’t considered before. Sometimes, questions challenge me to consider a different perspective.

Today, I told the story of Charlie to med students. Something good happened today.


Meanwhile, On Capitol Hill…

It is easy for me to get wrapped up in the chaos of our daily lives. I am so busy trying to survive the ups and downs that I sometimes forget about happenings that occur outside of our bubble.

Thankfully, I was informed last week that there are two pieces of legislation currently in front of Congress that concern premature birth and newborns.

One piece is the PREEMIE Reauthorization Act (S. 252/H.R. 541). According to the March of Dimes website:

“If enacted, the bill will authorize enhanced research, education and intervention activities aimed at improving pregnancy outcomes.”

More can be found about the PREEMIE Reauthorization Act here.

The other piece is Newborn Screening Saves Lives Reauthorization Act (S.1417/H.1281). Once again, the March of Dimes Website provides a concise description of the bill:

“The Newborn Screening Saves Lives Reauthorization Act reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance.”

More about the Newborn Screening Save Lives Reauthorization Act is located here.

What can you do?

Advocating for these bills from the comfort of your home is simple. The March of Dimes Advocacy Action Center has made it easy to write your representative in support of this legislation.

Let’s get behind helping all babies.

Photo Credit: Monica DeMariano

Photo Credit: Monica DeMariano