Today I had the privilege of attending a meeting with Representative Angel Cruz and his staff, Dr. Rachel Levine (the Physician General of Pennsylvania), and two other state representatives regarding … Continue reading Meeting with the Physician General
Yesterday, I (Lesa) had the opportunity to attend the quarterly meeting of Pennsylvania’s Newborn Screening (NBS) Advisory Board. These meetings are open to the public but members of the public … Continue reading NBS Advisory Board Meeting, April 19, 2016
We have an update on the status of Hannah’s Law (Act 148 of 2014). Read 2014 Act 148 – PA General Assembly here. I started making phone calls about three weeks ago … Continue reading Update on the Implementation of Hannah’s Law
Tori’s story being in the news last week has started an amazing campaign to get Pennsylvania to start screening all newborns for Krabbe and other similar genetic diseases! The law … Continue reading Take Action to Implement Newborn Screening in PA
This is the letter that several people have been sent in response to the Krabbe screenings:
Sent: Friday, November 06, 2015 12:32 PM
Subject: Re: Krabbe Screening
Thank you for writing. The Department of Health will do everything in its power to ensure that babies with genetic diseases receive timely and appropriate care. We understand that these cases can be devastating for families, and are working diligently to implement the act efficiently and with compassion.
The law passed by the legislature calls for the Newborn Screening Advisory Committee to approve any newborn screening test changes before they are implemented. In the coming weeks, the Department will be meeting with the Committee to ensure we are moving forward to protect children and their families. The department cannot move forward without the approval of this committee. The plan is to begin testing in February 2015, pending approval of the committee.
Though the Krabbe legislation, which was signed into law in October 2014, called for implementation within 60 days, resources were not allocated to appropriately administer these screenings. While the budget impasse is ongoing, and adding these new screenings could cost up to $3 million dollars annually, we are looking at ways to begin approved testing regardless of the challenges.”
Please be assured that the Department is committed to improving the health of all Pennsylvania newborns.
Karen M. Murphy, PhD RN
Secretary of Health
Pennsylvania Department of Health
After over a year of lobbying by the parents of Hannah Ginion, Hannah’s Law (Act 148 of 2014) was signed into law by Governor Tom Corbett on October 15, 2014. … Continue reading The Push for Implementation of Hannah’s Law (Act 148 of 2014) in Pennsylvania
Brennan and I had the opportunity to get away this weekend for a much needed break from our busy schedule. We had a Groupon to use for a bed and breakfast in New Holland, PA (about one hour from Hershey), so we made our reservations a few months ago and began to plan.
We started our adventure by going to the National Watch & Clock Museum in Columbia, PA (using another Groupon that we’d had). It was fascinating, and I can definitely say that I’ve never seen so many time-keeping pieces in one place before!
We checked into our lovely room at the Country Hearth Bed & Breakfast in New Holland that afternoon, and we were not disappointed! The owners are very friendly and knowledgable, and the 219 year old house is in great condition! We had a great dinner at Vinola’s Restaurant & Bar in Leola, PA at the recommendation of the B&B owners.
On Saturday, after a lovely breakfast and great conversations with our fellow travelers, we headed down to Longwood Gardens in Kennett Square, PA. I had been told by my friend Shannon just how wonderful this place was, so when we realized how close we’d be to Longwood Gardens this weekend, we decided that we had to head down there. It was well worth the $18 admission! I was excited to get to use my camera after many months of it sitting idly in our room…and I took about 700 pictures. Granted, I only kept 161 out of those, but it was SO easy to find great photographic subjects! I am excited to go during other seasons to see the different trees and plants that will be blooming/changing!
Since we were so close to Delaware (a state we hadn’t been to together), we had picked up a Groupon for a pizza place earlier in the week, and we had a late lunch in Wilmington. We didn’t realize how large their “large pizza” was, and it was definitely enough for us to also eat dinner later. We took our time getting back, and spent the rest of the evening reading, playing Scrabble, enjoying the jacuzzi tub and talking.
This is the first Easter Sunday in my life (that I can remember) that I did not go to church. We had decided to not rush home to go to church, and we didn’t want to try to find a random church in the area to attend. Instead, we enjoyed our day and continued to relax and be refreshed.
We had a wonderful weekend, and I can see why it is so important for married couples to get away every once in awhile. It gave us time to let go of our “to do” lists, let go of chores that need to be done, and focus on what really matters: our relationship. We met almost three years ago and time has certainly flown by. I can only imagine what the next few decades will feel like!