Arrivederci ALD

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Arrivederci ALD

501(c)(3) public charity whose mission is to identify and fund medical and scientific research for treatments and a cure for adrenoleukodystrophy

25/03/2024

What a fantastic conference, ! I learned so much, eagerly presented my experience with reproductive options (IVF, PGT, HLA matching, and cryopreservation), as well as spent time with so many of my favorite people 💙

29/11/2022

Today, on , we invite you to support Arrivederci ALD’s mission of funding innovative research for patients with adrenoleukodystrophy. No matter the size, your donation makes a crucial difference.
Thank you!

19/09/2022

Thank you for all that YOU do!

An amazing mom raising a family of advocates!

"My children did not have the privilege of newborn screening, but once I learned that efforts were being made to add ALD to the Texas screen, I knew I had an obligation to do everything in my power to help make that a reality. It was an honor to testify alongside other ALD families in support of newborn screening in 2019. Our stories of diagnostic odysseys, delays in treatment, and tragic lost lives gave the Texas legislature a brief glimpse into the realities of ALD and just how powerful a tool like newborn screening could be for our futures. My daughter, unknowingly, also played an important role in adding ALD to the screen. Her blood spot card, which had been stored in state archives since 2014, was used to validate Texas’s test. It’s never too early to become an advocate!" - Frani, ALD Mom / Arrivederci ALD

25/07/2022

When it comes to rare diseases, parents, caregivers, and patient groups are often forced to become citizen-scientists and drug developers to identify and advance therapeutic candidates.

Address

11201

Website

http://arrivederciald.org/

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