I had waited nearly a month for today’s meeting, but it was worth the wait. As you know by now (and if you aren’t aware, you can catch up here), … Continue reading Pursuing a Companion Bill in the Senate
Today was one of those days where everything made sense, once again. It was a day filled with non-coincidences (meaning that God was clearly at work because there’s just no … Continue reading It All Works Together for Good
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: https://www.legis.state.pa.us/cfdocs/legis/home/member_information/contact.cfm?body=H
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.
Today I attended the quarterly meeting of the Newborn Screening Advisory Panel of Pennsylvania as I did in April and will continue to do until Krabbe is on the mandatory … Continue reading NBS Advisory Board Meeting, August 23, 2016
While my dad was still in Pennsylvania with us, I came up with a plan to fly to California for a week over Mother’s Day weekend as a surprise for … Continue reading Mother’s Day Surprise
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
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
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
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