ALD Connect

09/01/2026

Whether ALD has been part of your life for generations, entered it unexpectedly, or is something you are learning about for the first time, your voice matters. During Leukodystrophy Awareness Month, we invite everyone affected by ALD, along with families, friends, clinicians, researchers, and supporters, to stand together as one community. Share your story below and help others understand the many ways ALD touches lives. 💙

Adrenoleukodystrophy (ALD) is a rare genetic disorder that many people have never heard of until it touches their own life or someone they know. ALD is caused by mutations in the ABCD1 gene, which normally helps break down very long-chain fatty acids (VLCFAs). When this process does not work properly, VLCFAs build up and damage the brain, spinal cord, and adrenal glands. An ALD diagnosis brings uncertainty, since there is currently no way to predict how the disease will manifest or progress in each patient.

During Leukodystrophy Awareness Month, we encourage you to share how ALD has touched your life. We also invite others to stand with our community. A heart on this post is an easy way to let individuals living with ALD know you see them and care. 💙

08/27/2026

Join us tonight! Come with a list of things you want others to know about what it is like to live with ALD. We want to hear what matters most to you and what you wish others better understood.

https://aldconnect.org/get-involved/community-calendar/

Our upcoming Structured Mental Health Community Call, originally scheduled for Thursday, August 20th, has been rescheduled to Thursday, August 27.

What do you wish people without ALD understood?

Living with ALD can feel isolating, particularly when so much of what you are carrying is invisible to others. The uncertainty. The anxiety around monitoring and MRIs. The impact on relationships and family. The emotional toll of living with a disease that others may not fully understand.

There may be other things you wish people knew, too. The perspective you’ve gained. The strength you’ve discovered. The relationships that have deepened. The moments of joy, gratitude, humor, or connection that are also part of life with ALD.

Join us on August 27th for an open conversation about the realities of living with ALD and connect with others who understand.

See you next week!

https://lp.constantcontactpages.com/ev/reg/sug4946

08/27/2026

Join us tonight! Come with a list of things you want others to know about what it is really like to live with ALD. We want to hear what matters most to you and what you wish others better understood.

https://aldconnect.org/get-involved/community-calendar/

Our upcoming Structured Mental Health Community Call, originally scheduled for Thursday, August 20th, has been rescheduled to Thursday, August 27.

What do you wish people without ALD understood?

Living with ALD can feel isolating, particularly when so much of what you are carrying is invisible to others. The uncertainty. The anxiety around monitoring and MRIs. The impact on relationships and family. The emotional toll of living with a disease that others may not fully understand.

There may be other things you wish people knew, too. The perspective you’ve gained. The strength you’ve discovered. The relationships that have deepened. The moments of joy, gratitude, humor, or connection that are also part of life with ALD.

Join us on August 27th for an open conversation about the realities of living with ALD and connect with others who understand.

See you next week!

https://lp.constantcontactpages.com/ev/reg/sug4946

08/21/2026

We were happy to help a family in our community purchase a much-needed wheelchair for their son.

For families living with ALD, access to the right equipment and resources can have a significant impact on comfort, mobility, independence, and quality of life. Yet these needs can also create substantial financial burdens. Our Patient and Family Support Program provides direct financial assistance to help families access resources that can make everyday life a little easier.

We are grateful to our donors and supporters who make this program possible and allow ALD Connect to provide meaningful, practical support directly to individuals and families affected by ALD. 💙

08/20/2026

At ALD Connect, we are committed to understanding the global landscape of adrenoleukodystrophy: where individuals with ALD live, their experiences, and how we can best support them.

We are thrilled to be partnering with ALD organizations from around the world through the Global ALD Advocacy Network to build a clearer picture of our community. So far, 514 people from 42 countries have participated in the ALD Landscape Project.

The more individuals with ALD we document, the more we can demonstrate the urgency of developing new treatments.

There is strength in numbers. They help demonstrate the need for investment in ALD to biotech companies, academic institutions, clinicians, researchers, government agencies, and donors, all of whom play a critical role in driving progress. By participating in this global effort, you are helping build a stronger collective voice for advocacy, clinical care, education, research, and treatment development.

If you have been diagnosed with ALD, or are the legal guardian of someone currently living with ALD, please take three minutes to complete our short form.

Help us reach the next 500. Every person counted strengthens the case for greater attention, investment, and action in ALD.

https://aldlandscape.org/

08/19/2026

Our upcoming Structured Mental Health Community Call, originally scheduled for Thursday, August 20th, has been rescheduled to Thursday, August 27.

What do you wish people without ALD understood?

Living with ALD can feel isolating, particularly when so much of what you are carrying is invisible to others. The uncertainty. The anxiety around monitoring and MRIs. The impact on relationships and family. The emotional toll of living with a disease that others may not fully understand.

There may be other things you wish people knew, too. The perspective you’ve gained. The strength you’ve discovered. The relationships that have deepened. The moments of joy, gratitude, humor, or connection that are also part of life with ALD.

Join us on August 27th for an open conversation about the realities of living with ALD and connect with others who understand.

See you next week!

https://lp.constantcontactpages.com/ev/reg/sug4946

08/18/2026

The ABCD1 Variant Registry has a new look!

Since 1999, the registry has served as a publicly accessible database and now catalogs more than 1,300 unique ABCD1 variants.

The registry website has been refreshed to make it easier to search variants and submit new information.

New ABCD1 variants, additional cases of variants already listed, and evidence that adds to or refines an existing variant classification are all welcome.

Explore the updated ABCD1 Variant Registry: https://adrenoleukodystrophy.info/mutations-and-variants-in-abcd1

08/18/2026

RESEARCH OPPORTUNITY: Do you or your family have experience with stem cell transplantation?

Researchers at the University of Saskatchewan are inviting patients and families to share what it was like to consider, pursue, and access hematopoietic stem cell transplantation (HSCT). The study aims to learn directly from families about the factors that shaped their treatment decisions and their experiences navigating the transplant process.

The study is open to eligible individuals who have received or are planning to receive HSCT, as well as parents or legal guardians of individuals who underwent transplant during childhood or adolescence. Participants must have lived in Canada or the United States at some point.

Participation consists of a single interview of up to two hours.

For more information, contact:

Tyler J. Wenzel, PhD, BEd
Assistant Professor
University of Saskatchewan
[email protected]
(306) 844-1332

Full eligibility criteria are available on the study poster.

Thank you for helping ensure that patient and family experiences are represented in research aimed at improving education and access to transplant care.

https://aldconnect.org/wp-content/uploads/2026/08/University-of-Saskatchewan.pdf

08/11/2026

Please check out this ALD research opportunity! This study is led by Dr. Elise Townsend at the MGH Institute of Health Professions (MGH-IHP) and Dr. Florian Eichler at the Massachusetts General Hospital (MGH) Center for Rare Neurological Diseases (CRND) in Boston, MA.
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Hello, ALD community!

We invite you to participate in a research study for infants with ALD using a newly developed clinical scale to measure how and when developmental milestones are achieved via Zoom videoconferencing. We are testing the tool across several groups of infants with neurogenetic conditions to validate the scale for use in clinical trials.

Who can join the study? We are enrolling infants and young children (