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
Category: Newborn Screening
Busy Summer and a Much Needed Update
I haven’t blogged much this summer and that has partially been intentional, partially not. Brennan and I have been traveling, working many weekends at MHS, spending time with family and … Continue reading Busy Summer and a Much Needed Update
Hunter’s Hope Symposium: Thursday
Today we heard reports on the Leukodystrophy Care Network that Hunter’s Hope is working hard to implement around the country. They are the voice of the family in ensuring excellent … Continue reading Hunter’s Hope Symposium: Thursday
Meeting with the Physician General
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
Mother’s Day Surprise
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
NBS Advisory Board Meeting, April 19, 2016
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
Call to Action in Pennsylvania
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
Krabbe and The Gradual Loss of Abilities
(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
The Joy of the Known
I realized recently that part of our inner joy and peace comes from the knowledge that we don’t have to wonder anymore when she will be taken from us. We … Continue reading The Joy of the Known
Silence
For the past four months we have had the constant humming of an oxygen concentrator in our home. Every few minutes we would hear the loud noise of the … Continue reading Silence
Even So, Joy 