“I knew you were a miracle from the second I looked at your beautiful little face and you are an angel for so many boys that will be born after you with this dreaded disease. For the time I have left here, I will continue to help all the boys and families with ALD and try to make a difference in their lives.”
-Elisa Seeger, Founder, ALD Alliance, on the passing of Aidan’s Law, March 29, 2013
-Elisa Seeger, Founder, ALD Alliance, on the passing of Aidan’s Law, March 29, 2013
New York ALD Outreach Project
The state of New York reached an important milestone in December 2023: newborn screening for ALD turned ten years old. New York was the first state to implement the screening in 2013 following Aidan's Law which had passed earlier that year thanks to the advocacy work of our organization.
Within the first month of the implementation of ALD newborn screening in New York, three boys were diagnosed with ALD and one girl was diagnosed with a different peroxisomal disorder that would not have been picked up without the screening. Fast forward to today and more than 2.2 million babies have been screened with 157 babies having been diagnosed. Those children are now receiving the life saving monitoring and/or treatment needed to grow up and live their best possible lives.
To commemorate this achievement, we will be inviting all clinicians that care for ALD patients through New York state's metabolic centers to be a part of a new program we will be launching in April entitled The New York ALD Outreach Project. The goal of this initiative is to help clinicians best support the ALD families they care for in their practice. As you already know, newborn screening is about so much more than receiving a diagnosis. These families need continued guidance and support, particularly for a disease like ALD that has various phenotypes and has the ability to impact multiple family members after the diagnosis of a newborn. We have created several resources for families since newborn screening began and we are eager to review these materials with our state's metabolic centers.
If you are a clinician that treats ALD patients at a metabolic center in New York, we will be reaching out to you soon to invite you to a “Lunch & Learn” session with Elisa Seeger (Founder) and Miranda McAuliffe (Director) of the ALD Alliance. We understand that schedules are busy and for that reason we can arrange to either visit you locally or prepare a virtual meeting. Either way, we are happy to provide you with lunch while we review our resources that you may incorporate into your clinic. We are also thankful for the opportunity to receive your feedback on the programming we provide to our ALD patient community.
Lunch & Learns will be scheduled with Miranda: [email protected]
We will begin the meetings in April 2024 and will have availability to meet from April to June. We look forward to the opportunity to meet with you and your team this Spring. I know together we will continue to make a difference in the lives of children with ALD.
A special thank you to the Ponce De Leon Foundation for sponsoring this project. Ponce Bank was born in the Bronx (New York) in 1960 to provide financial services to a community long ignored by bigger banks. They have never wavered from this mission and they have reinvested more than 80% of their assets directly into the communities they serve. We are so proud to partner with them on this special initiative.
Within the first month of the implementation of ALD newborn screening in New York, three boys were diagnosed with ALD and one girl was diagnosed with a different peroxisomal disorder that would not have been picked up without the screening. Fast forward to today and more than 2.2 million babies have been screened with 157 babies having been diagnosed. Those children are now receiving the life saving monitoring and/or treatment needed to grow up and live their best possible lives.
To commemorate this achievement, we will be inviting all clinicians that care for ALD patients through New York state's metabolic centers to be a part of a new program we will be launching in April entitled The New York ALD Outreach Project. The goal of this initiative is to help clinicians best support the ALD families they care for in their practice. As you already know, newborn screening is about so much more than receiving a diagnosis. These families need continued guidance and support, particularly for a disease like ALD that has various phenotypes and has the ability to impact multiple family members after the diagnosis of a newborn. We have created several resources for families since newborn screening began and we are eager to review these materials with our state's metabolic centers.
If you are a clinician that treats ALD patients at a metabolic center in New York, we will be reaching out to you soon to invite you to a “Lunch & Learn” session with Elisa Seeger (Founder) and Miranda McAuliffe (Director) of the ALD Alliance. We understand that schedules are busy and for that reason we can arrange to either visit you locally or prepare a virtual meeting. Either way, we are happy to provide you with lunch while we review our resources that you may incorporate into your clinic. We are also thankful for the opportunity to receive your feedback on the programming we provide to our ALD patient community.
Lunch & Learns will be scheduled with Miranda: [email protected]
We will begin the meetings in April 2024 and will have availability to meet from April to June. We look forward to the opportunity to meet with you and your team this Spring. I know together we will continue to make a difference in the lives of children with ALD.
A special thank you to the Ponce De Leon Foundation for sponsoring this project. Ponce Bank was born in the Bronx (New York) in 1960 to provide financial services to a community long ignored by bigger banks. They have never wavered from this mission and they have reinvested more than 80% of their assets directly into the communities they serve. We are so proud to partner with them on this special initiative.
