Aidan Jack Seeger Foundation/ALD Alliance

Home
United States
Williamsburg, OH
Aidan Jack Seeger Foundation/ALD Alliance

Directions Website Contact the organization

Aidan Jack Seeger Foundation (now ALD Alliance) was started in 2012 to help advocate for ALD Newborn Screening and to help families affected by ALD.

Non-Profit 501c3

11/02/2026

Some great news in New Jersey -
Over a year ago the ALD Alliance put in an Amicus Brief supporting the New Jersey Department of Health’s motion to dismiss a class action lawsuit asking the state of New Jersey to destroy blood spot cards after only a two week period - which would have greatly undermined the state’s successful newborn screening program.

The judge found in favor of the NJ Department of Health - a huge victory for newborn screening and public health.

The value of blood spot cards after birth serves so many purposes and helps to improve the health of our babies!!!

Thank you Regina Phillips for filing this on our behalf 🙏🏼
A decision has been made

11/01/2026

If your baby boy was diagnosed through newborn screening in the United States, please register for one of our free care packages. The items provided are meant to help guide you through your diagnosis and make the monitoring process easier.
You are not alone!
https://www.aldalliance.org/family-support.html

10/30/2026

Last night was an incredibly meaningful evening at the Prix Galien Patient First Award Ceremony. ❤️

It was an honor to be part of an event that recognizes the importance of putting patients and families at the center of innovation, advocacy, and progress in healthcare.

I am especially grateful to Chris Porter and Travere Therapeutics for their support, partnership, and commitment to helping advance my work in newborn screening and our Surge to Save Newborns initiative.

Newborn screening is about more than a test. It is about giving babies the chance for an early diagnosis, access to treatment, and ultimately, the opportunity for a healthier future. It is about making sure no family has to endure the heartbreak of a diagnosis that could have been caught sooner.

Congratulations to Travere Therapeutics for being nominated for the Surge to Save Newborns and your commitment to putting the patient first.
Travere Therapeutics

Thank you to Travere Therapeutics for your years of support, for believing in this mission, standing alongside us, and helping amplify the urgent need to advance newborn screening.

Together, we can turn awareness into action, innovation into access, and hope into a future for more newborns.

EarlyDetection PatientAdvocacy TogetherWeCan

10/29/2026

Saturday!!!

Join us for a Ride In Dice Roll at RG’s on 10/31 from 11:30-2:30p

RG’s Almost Heaven Harley Davidson -
2260 Murphy’s Run Rd
Bridgeport, WV

Riders can ‘Ride In’ between 11:30 and 2p to roll the dice to make their best poker hand!

All donations benefit ALD Alliance to directly support children and families battling adrenoleukodystrophy.

Family friendly community event with DJ, beverage and food truck, Adult Hayride, Bike Games and hill climbs, Spin the Wheel, Old Bike Show

Thank you Kristen Fowler Aidan’s Ride West Virginia Almost Heaven Harley Davidson Matthew Fowler

10/28/2026

I’m looking forward to joining patient advocates, scientific leaders and healthcare innovators at the Galien Patient Summit on October 29 in New York, to advance the role of patients as partners in medical innovation.

The Summit will also host the inaugural Prix Galien Patient First Award in honor of Michael J. Fox, recognizing outstanding initiatives that embed patients’ voices and lived experience into research, clinical trials and care.

A shared commitment: “No decision for me without me.”

10/26/2026

Day One - NORD Breakthrough Summit -
Poster Presentation - Lunch Presentation
Sharing the importance of Newborn Screening and funding with Surge to Save Newborns bill -

Seeing old friends & making new ones -
Thank you National Organization for Rare Disorders (NORD) Travere Therapeutics 🙏🏼
Surge to Save Newborns

10/26/2026

Join me at the 2026 , Oct. 25–27 in Washington, DC, for expert-led sessions and meaningful connections focused on finding rare disease answers faster, unlocking investment, and making knowledge work for better care. Register: https://nordsummit.org/

10/25/2026

Join us for a Ride In Dice Roll at RG’s on 10/31 from 11:30-2:30p

RG’s Almost Heaven Harley Davidson
2260 Murphy’s Run Rd
Bridgeport, WV

Riders can ‘Ride In’ between 11:30 and 2p to roll the dice to make their best poker hand!

All donations benefit ALD Alliance to directly support children and families battling adrenoleukodystrophy.

Family friendly community event with DJ, beverage and food truck, Adult Hayride, Bike Games and hill climbs, Spin the Wheel, Old Bike Show

10/23/2026

Gerald Raymond, MD (Johns Hopkins University) gives us an in-depth look at this severity scale used to evaluate demyelination in patients with ALD. Watch this video and other videos from the conference here: https://www.youtube.com/watch?v=UCX5jdItnVU&list=PLBf1VYFJCa4q_WXMZT2euse1gxgiU0nfy&index=7&t=2s

10/21/2026

Act Now! Join the fight with the Surge to Save Newborns coalition to call on Congress to fund Newborn Screening for all RUSP-approved conditions. It only takes one minute to do your part and sign our petition. Sign it here: https://surgetosave.org/act-now/

Address

Williamsburg, OH

Website

http://www.aldalliance.org/

Alerts

Be the first to know and let us send you an email when Aidan Jack Seeger Foundation/ALD Alliance posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.