Category: Politics

Differences Make Us Better

If you had told me twenty years ago that one of my favorite people now would be a Liberal (gasp!), I would have laughed. I would have told you that you must be mistaken.

Lesa in 2000 was immersed in partisanship, convinced that her way of thinking was the only valid way and that anyone who thought differently was an enemy. This was not the result of parenting, or church, or school, but rather a result of my political experience through campaigns, internships, the media, and friendships.

It was never a message that was blatantly proclaimed, but rather a subtle invasion of my subconscious that grew stronger with every political experience. It felt good to be part of a team, to be with likeminded people. It was satisfying to be fighting together to make the world a better place, even if we had tunnel vision and refused to listen to “their” ideas. It felt good to have something in common, even if it was a fake enemy. We looked for the weaknesses in their arguments and focused solely on that. If we found their weakness, we could prove them wrong and we could win.

It was always about the fight.

When I began to lobby our Newborn Screening legislation here in Pennsylvania, I was forced to consider my biases frequently because the representative who introduced the first two bills was a Democrat. Rather than focusing on all the things we didn’t have in common, I chose to focus on the one thing we did: passion for Newborn Screening.

And then, I became the “victim” of such bias when I was told my bill would not go to the floor of the House because “the wrong party” introduced it. I was forced to go to the Senate, to the majority party, to have another bill introduced to circumvent the roadblocks. My legislation was not worthy of consideration because the minority party introduced it. Mind blowing. Newborn Screening affects EVERYONE and yet I’m still waiting for progress.

Two of my greatest allies in the legislature over the past four years do not agree with me politically. But, we agree on one important thing: Newborn Screening, specifically for Krabbe. These two women (Rachel and Ashley) have been with me nearly every step of the way and it doesn’t matter that we disagree on many issues. It just doesn’t matter. They are worth my respect, kindness, and appreciation. We are a team.

All of this is why I am overall disillusioned by – and uninterested in serving in – politics today. If we can’t overlook party lines and consider a bill on its merit, what’s the point?

Last night we watched a compelling and powerful sermon by Pastor Miles McPherson (thanks to our church, LCBC, for choosing to share such an important message instead of what was planned), and I was reminded about some incredible changes the Lord has made in my heart and in my life regarding people who are different from me. As you’ve gathered by now, I don’t write this in regards to skin color, but rather political affiliation. The lesson is the same, though, for any differences that we observe in others.

Miles McPherson said that we all have far more in common than we’d think, and I’ve found that to be very true, but also challenging to put into practice.

Traveling to several different countries to serve has helped me tremendously in this way, as has church planting. Being around people who are different from us makes us better people.

I remember my first moms group meeting two years ago. There was this woman at my assigned table with dreadlocks and views that opposed my own. I had started going to two mom’s groups in an effort to make local mom friends and I clearly remember thinking that she was not going to be the friend I was seeking.

The next meeting we were talking and I discovered that we had something in common (I believe it was cloth diapering). That one thing turned into so many more and she quickly became the person I most looked forward to seeing. She is a treasure and I hope that our friendship can continue to grow.

Had I closed my heart and mind to her because of our differences, we wouldn’t be friends today. I no longer focus on the issues that divide us. I try to always focus on what unites us. We are both followers of Jesus, mothers who want the best for our children, and we’re actually even cousins through marriage (that was a crazy realization). She is doing incredible things that are biblical and right, and I’m proud that she’s my friend.

I am not perfect at this by any means. I still catch myself hearing the word Liberal and wanting to run away. I make assumptions based on past experiences and on what I was taught by many in politics to believe.

But, guess what? Just because you see things differently doesn’t mean you can’t be friends or work toward a common goal. Just because someone has had different experiences that have shaped their worldview doesn’t mean their view is invalid.

I grew up in a rural county with more cows than people, a county where just about everyone views life the same way. When I moved away and encountered different denominations, different political views, different ways of doing life, it was a serious challenge because I thought my way was the only way. When I spent several weeks out of the country at various times, I was challenged to accept that things can be done differently.

Different doesn’t mean bad.

I write all of this to hopefully encourage you to consider other viewpoints. Listen to people who are different from you. Truly listen. Don’t listen to argue, but to learn.

Humble yourself and be willing to consider someone else’s journey and story. Recognize that you may not be right about everything. Learn about why they have the view they do.

Get out of your comfort zone and learn about other ways to think and live. You might be surprised at how amazing that experience can be.

Krabbe Awareness Month: Day Twenty-Six

Krabbe Awareness - 26

South Carolina passed a bill after this image was created, so they will begin testing in the next 1-2 years.

Indiana expects to begin testing in 2020.

Pennsylvania will hopefully be testing by next year. We have a bill in the legislature (HB 730, numbered for Tori’s birthday) that will make screening equal throughout PA, and Krabbe will become mandatory. If you live in Pennsylvania, please contact your state representatives/senators and ask for their support!

Newborn Screening Awareness Month

(Hover over – or tap on – each state to see how many diseases are included on their NBS tests)

September is Newborn Screening Awareness month so we will be providing information throughout the month about Newborn Screening (NBS).

Here’s a brief introduction:

Newborn Screening is a crucial component of ensuring the health of all newborns, yet many parents have no idea what is being done when the test happens.

Photo of Isaiah’s NBS

Newborn Screening (NBS) happens between 24-48 hours of birth and it involves the pricking of the baby’s heel in order to apply blood to special paper (filter paper). The blood is used to test for treatable conditions – conditions for which timing is everything.

Did you know that each state screens for a different number of diseases?

I created the interactive map above to visually demonstrate the discrepancy from state to state, or you can see the chart below. I obtained all of this data from on August 31, 2019. 

State Name Number of Diseases Screened
Alabama 46
Alaska 53
Arizona 31
Arkansas 32
California 63
Colorado 44
Connecticut 65
Delaware 52
District of Columbia 62
Florida 55
Georgia 32
Hawaii 49
Idaho 48
Illinois 64
Indiana 49
Iowa 53
Kansas 31
Kentucky 58
Louisiana 34
Maine 55
Maryland 61
Massachusetts 66
Michigan 59
Minnesota 61
Mississippi 61
Missouri 60
Montana 32
Nebraska 37
Nevada 57
New Hampshire 39
New Jersey 57
New Mexico 49
New York 60
North Carolina 37
North Dakota 52
Ohio 46
Oklahoma 54
Oregon 53
Pennsylvania 38
Rhode Island 34
South Carolina 55
South Dakota 50
Tennessee 70
Texas 55
Utah 52
Vermont 35
Virginia 33
Washington 34
West Virginia 38
Wisconsin 47
Wyoming 52

According to there are 80 treatable conditions that could be screened for at birth, but no state screens for all 80. Visit their site to learn more about what diseases are included on your state’s NBS. 

This means that your ZIP code determines life or death if you are born with one of these screenable/treatable diseases. 

Where you live should not decide whether you live or whether you die. – U2

There is a national panel called the Recommended Uniform Screening Panel, or the RUSP, and there are currently 35 diseases on the RUSP. Many states screen for all of these diseases but not all. 

As you can see, there’s a lot of work to be done in the realm of Newborn Screening to ensure that every child is screened equally for all diseases, including Krabbe. One thing you can do is contact your legislators to ask them to take NBS seriously and work on increasing your state’s screening panel. 

Comment below with any questions, comments, etc. Do you remember when your child was screened? Did you know what was happening? 


H.B. 730 – Time to Take Action

PENNSYLVANIA – it’s time for action!

We’ve been waiting (not so patiently) to be able to tell you that we have important legislation that will be introduced VERY soon, and if it is signed into law (which is likely given the broad support we have) Krabbe will finally be mandatory by default.

Hannah’s Law (Act 148 of 2014) was created to make screening for Krabbe mandatory; however, it has yet to be fully implemented because PA’s NBS system is broken.

This bill will not only fix Pennsylvania’s broken NBS system and ensure that EVERY baby is screened equally (right now your zip code determines what diseases are included on your baby’s NBS panel), but it will fully implement Hannah’s Law at last.

What can you do? If you live in Pennsylvania, you can send a note like the one below (or copy/paste if you want) to request that your legislator CO-SPONSOR the legislation.

It will be called H.B. 730 – in honor of Tori’s birthday ❤ We were so surprised and honored by that!

If you share this post PLEASE make sure our text accompanied it. Otherwise it will just be the link to the memo.

If you want to copy/paste the following, feel free! You can find your representative’s info here:

Dear ___________,

My family and I are residents of your district and wanted to make you aware of a bill in hopes that you would sign on as a co-sponsor.

It will be numbered H.B. 730, the numbers representing a precious girl’s birthday. Victoria Brackbill passed away from Krabbe Leukodystrophy in March 2016 at 20 months of age. Her life could have been saved had she been screened for Krabbe at birth.

Victoria’s family has been working with the Dept. of Health, Rep. Cruz (who authored Act 148 of 2014), Dr. Levine, and others over the past few years to help them to see the weaknesses in Pennsylvania’s Newborn Screening program, and they have listened. The fight has become about so much more than Krabbe being one of the mandatory screenings in PA – it has become about making the program better and more equal as a whole.

Pennsylvania currently ranks 2nd to LAST in the nation for the number of diseases for which every baby is screened. As you will read in this memo, your zip code determines life or death if you’re born with one of these diseases that can be treated if caught at birth. That is simply unacceptable and we’re seeking to change that.

This isn’t a partisan issue – this is a human issue.

If H.B. 730 is signed into law (which is likely will be as the Governor also supports our efforts), Krabbe will become mandatory by default. More importantly, though, every single baby born in Pennsylvania will be screened for the exact same diseases and have the same chance at life as all the other babies.

Thank you in advance for your consideration, and hopefully your support.