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
Today I (Lesa) had a meeting with the staff from Representative Angel Cruz’s office regarding the legislation they are preparing to introduce to reform the way Newborn Screening is done … Continue reading Call to Action in Pennsylvania
(I started this post a month or so ago and saved it as a draft…I feel it is still an informative post so I finished it, though I changed some … Continue reading Krabbe and The Gradual Loss of Abilities
Today was an exciting day for Tori (and us). Today those with Rare Diseases in Pennsylvania were recognized and their advocacy efforts were applauded publicly at the Capitol. Tori and … Continue reading Rare Disease Day at the Capitol
When Wendy Myers first asked me if Tori would like to attend a tea party, I imagined a small, simple gathering in a living room or backyard. Never would I … Continue reading Tori’s Bucket List: Attend a Tea Party
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
It occurred to us a few days ago that perhaps Tori’s Bucket List could be a catalyst to get Krabbe in the news. After all, everyone loves a positive story … Continue reading Tori in the News
My talented cousins came up with the idea to create a coloring page with a giraffe (and eyes like Tori) to help spread awareness and to remind people to both … Continue reading Giraffe Coloring Page for Leukodystrophy Awareness Month