Aidan Jack Seeger Foundation/ALD Alliance

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Aidan Jack Seeger Foundation/ALD Alliance

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

06/17/2026

Want to fundraise but not exactly sure where to start? ALD Alliance has a Fundraising 101 tip sheet on our website to help you get started. Fundraising is crucial for our organization so we can support Newborn Screening efforts, eradicate death by zip code, and provide ALD family support programs.

Find our tip sheet here:https://www.aldalliance.org/uploads/7/3/6/5/73650801/fundraising_tip_sheet.pdf

06/15/2026

Every baby deserves a healthy start to life, no matter where they are born.
Which is why we founded the Surge to Save Newborns, a campaign to ensure that every baby in every state receives lifesaving screening at birth for expert-recommended
conditions.

Right now, some babies miss narrow treatment windows to prevent lifelong disability or premature death because states face challenges in implementing updated screenings.

Join us and To Save Newborns in calling on Congress to pass a one-time surge of funding to implement screening for all conditions included on the Recommended Universal Screening Panel (RUSP).

💜 Learn more: surgetosave.org
💜 Take action now: https://surgetosavenewborns.quorum.us/campaign/us/

06/12/2026

Help us reach our goal of $60K! Start a monthly donation of at least $25 for a minimum of 12 months. For your generous support, you will be entered into a raffle to win a beautiful portrait of your family done by Seth Lewbotiz. Your contribution helps keep our annual meeting and special programs available!

Start your donation and enter the raffle here: https://www.aldalliance.org/ways-to-give.html

06/10/2026

We want to hear from you — what kinds of support would help your family most right now? Emotional support, mental health resources, financial assistance, medical equipment, or something else? Your voice matters, and we’re here to help however we can. Contact us at [email protected] if we can help your ALD journey in any way! 💚

06/09/2026

From a few years ago - this year we’ve changed Aidan’s Ride Brooklyn from June to September -
More details to come!
See you all there ❤️

06/08/2026

Thank you Christy Duncan, MD (Boston Children's Hospital) & Andromachi Scaradavou, MD (Memorial Sloan Kettering Cancer Center) discuss the treatment options for early cerebral ALD.

Check out this video and more on our YouTube channel from our ALD Standards of Care Conference and ALD NBS Consortium
https://youtu.be/V8ZxokNl4w4

06/05/2026

Every donation makes a meaningful difference by helping us provide support, advance research, and bring hope to families affected by rare disease. Together, we can create lasting impact and move closer to a brighter future for every warrior and their loved ones.
Here are the three ways you can donate to ALD Alliance.
Paypal:[email protected]
Venmo:
Credit Card on our Website: https://www.aldalliance.org/ways-to-give.html

06/03/2026

There are only 25 days until the Motorcycle Extravaganza in Virginia. Join us for a motorcycle ride in beautiful Afton, Virginia on June 27, 2026 at 12:00 PM. Tickets are $10 with an extra $5 for dirt track and drag races. Plan for food, vendors, and live music. Your participation continues Aidan’s legacy for newborn screening to help save babies!
For registration and more information, go to
https://pro.software4nonprofits.com/secure/cause_pdetails/MjQzMzcx

06/01/2026

We are thrilled to announce Kasey Feldt to be a part of the ALD Alliance team in the Administrative Assistant role. Kasey has a passion for helping families with rare diseases after her first son, Dawson, passed from Krabbe Leukodystrophy. Check out her full bio on https://www.aldalliance.org/board-of-directors.html

05/27/2026

Did you know that 98% of states are not yet screening for all 40 of expert-recommended conditions?
ALD Alliance has founded a coalition with 20 other organizations to help .
Our fight is calling on lawmakers to support federal funding to implement RUSP-approved conditions in all states.
Go to surgetosave.org to learn more and by signing our petition to Congress.

Address

Williamsburg, OH

Website

http://www.aldalliance.org/

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