ALD Connect

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ALD Connect https://linktr.ee/aldconnect

Our mission is to improve health outcomes for individuals with ALD by empowering patients/caregivers, raising awareness, and accelerating the translation of scientific breakthroughs into better clinical care.

Our Structured Mental Health Community Call is tonight!Living with ALD can bring emotional challenges, uncertainty, and ...
10/15/2026

Our Structured Mental Health Community Call is tonight!

Living with ALD can bring emotional challenges, uncertainty, and difficult conversations. Having a space to connect, share experiences, and receive support can make a meaningful difference.

Join us tonight, October 15, at 7:00 PM Eastern for Bringing Hope to the Diagnosis, a conversation focused on mental health and emotional well-being.

The call will be facilitated by ALD Connect Board Member Jesse Torrey, MA, LPC, who will guide a supportive discussion about navigating the emotional aspects of an ALD diagnosis and living with ALD. Whether you're newly diagnosed, supporting a loved one, or have been navigating ALD for years, we hope you'll join us.

Registration is required: https://lp.constantcontactpages.com/ev/reg/w482h89
We look forward to seeing you tonight! 💙

We’re excited to share the agenda for our 2026 Annual Meeting & Patient Learning Academy! This is shaping up to be our b...
10/14/2026

We’re excited to share the agenda for our 2026 Annual Meeting & Patient Learning Academy! This is shaping up to be our best conference yet!

In just a few weeks, people from around the world will gather in Salt Lake City, Utah. Patients, families, researchers, clinicians, advocates, industry partners, and supporters, all coming together with a shared purpose: to advance research, improve care, strengthen our community, and move us further along the Pathway to a Cure.

We have an incredible lineup of speakers and sessions covering the latest research, emerging treatments, diagnosis, care, and living with ALD. Check out the agenda! What are you most looking forward to? What questions do you have for our experts? Let us know in the comments!

We can’t wait to see everyone in Salt Lake City! 💙

In-person registration closes this Friday, October 16, at 5:00 PM Eastern: https://aldconnect.org/get-involved/annual-meeting-and-patient-learning-academy/

Agenda is here:https://files.constantcontact.com/467b9a0d301/5349a710-4d5f-4d06-af16-4a76c1796650.pdf

Ask the Experts: A Conference Favorite Returns!One of the things that makes the ALD Connect Annual Meeting and Patient L...
10/13/2026

Ask the Experts: A Conference Favorite Returns!

One of the things that makes the ALD Connect Annual Meeting and Patient Learning Academy so special is the opportunity to connect directly with some of the world's leading ALD experts. These brilliant, dedicated, and generous researchers and clinicians are not just presenting from the stage. They're sitting alongside attendees, sharing conversations, and getting to know the patients and families at the heart of their work.

Ask the Experts brings them all together on one stage for an open Q&A with the ALD community. Our experts are always good sports about being put in the hot seat, and it's one of the most popular sessions of the conference! From the latest research and potential treatments to diagnosis, care, and living with ALD, no question is too big or too small.

What questions do you have for our experts? Share them in the comments below! 👇🏽

We'll do our best to address as many questions as possible during the session. Please note that while our experts can discuss general topics related to ALD, they cannot provide individualized medical advice or address specific personal situations.

We look forward to seeing everyone at our 2026 Annual Meeting and Patient Learning Academy in Salt Lake City! 💙

Registration for in-person participation closes Friday, October 16, 2026, at 5:00 PM Eastern: https://aldconnect.org/get-involved/annual-meeting-and-patient-learning-academy/

Newborn screening saves lives, but what happens when screening identifies a variant of uncertain significance? For famil...
10/12/2026

Newborn screening saves lives, but what happens when screening identifies a variant of uncertain significance? For families, these findings can create uncertainty about what the future may hold.

At our 2026 Annual Meeting and Patient Learning Academy in Salt Lake City, Professor Stephan Kemp will present The VUS Crisis in Population Screening: Why Biochemistry Remains Essential, exploring the challenges of interpreting variants of uncertain significance (VUS) and the critical role of biochemical testing in improving diagnostic accuracy.

Professor Kemp will highlight The Grey Zone Project, an important research project combining C26:0-lysoPC blood testing with clinical and family information to help distinguish disease-causing ABCD1 variants from those that do not cause ALD. The project is now exploring whether this same biochemical marker, measured at birth, could help predict a child's risk of developing adrenal or cerebral ALD, potentially providing families and clinicians with more information to guide care and monitoring.

Following his presentation, the Adlers will share a family perspective on the uncertainty surrounding these findings and how it has affected their lives.
We are grateful to the Adler family and the Virginia B. Toulmin Foundation for their generous support and commitment to advancing this important research.

This work is an important part of our Pathway to a Cure. As newborn screening expands and genetic technologies advance, improving our ability to interpret results, understand individual risk, and make informed clinical decisions is essential to improving outcomes for people with ALD.

We look forward to bringing together the scientific and family perspectives on this important issue and exploring what these advances could mean for the future of ALD screening and care.

There’s still time to join us! 💙

https://aldconnect.org/get-involved/annual-meeting-and-patient-learning-academy/

10/11/2026

Meet María Teresa – Asociación ALD-X España 🇪🇸

We’re continuing to introduce the international organizations that make up our Global ALD Advocacy Network. 💙

María Teresa Martínez is the co-founder of Asociación ALD-X España (Association ALD-X Spain), and she’ll be joining us in Salt Lake City for our 2026 Annual Meeting and Patient Learning Academy!

María Teresa’s sons were diagnosed with ALD in 2022 after a blood test revealed adrenal insufficiency. Shortly afterward, she co-founded ALD-X España to support other families in Spain navigating an ALD diagnosis.

To learn more about ALD-X España and its work, visit aldxesp.com.

In January, CG Life reached out to ALD Connect about a rare disease awareness campaign they were developing, highlightin...
10/09/2026

In January, CG Life reached out to ALD Connect about a rare disease awareness campaign they were developing, highlighting a day in the life of individuals and families affected by rare disease. We were honored to help connect them with the Findling family, and we’re excited to see that connection become Dylan Findling: A Story of 24 Hours.

The film follows Dylan and his family through a day in their lives, offering a glimpse into the realities of living with ALD, but also everything that exists alongside it: family, determination, hope, and a commitment to living life as fully as possible.

The Findlings are an incredible family and strong advocates for Dylan and the broader ALD community. By sharing their experience so openly, they are helping others better understand ALD and the profound impact it can have on individuals and families.

We’re grateful to CG Life and 24/364 for choosing to shine a light on ALD and for telling Dylan’s story with such care. Most of all, thank you to the Findling family for opening their lives to others and continuing to use their experience to raise awareness and advocate for the ALD community.

We hope you’ll take time to watch and share. 💙

https://www.youtube.com/watch?v=BjwMDudb3m4

Kick off the 2026 Annual Meeting and Patient Learning Academy with a drink, good conversation, and some great company! 🍸...
10/09/2026

Kick off the 2026 Annual Meeting and Patient Learning Academy with a drink, good conversation, and some great company! 🍸

One of the best parts of our conference is our community and the time we get to spend together.

Join some of our ALD Connect Ambassadors for Happy Hour on Thursday, November 5 at 6pm local time in the Contribution Cocktail Lounge at the Hyatt Regency in Salt Lake City!

Catch up with old friends, meet someone new, and enjoy making some ALD Connect-ions before a busy couple of days begin.

Cheers! 💙

Can biomarkers help us predict whether individuals with an 𝘈𝘉𝘊𝘋𝟣 variant will manifest disease? 🔮Dr. Troy Lund has had a...
10/08/2026

Can biomarkers help us predict whether individuals with an 𝘈𝘉𝘊𝘋𝟣 variant will manifest disease? 🔮

Dr. Troy Lund has had a longstanding interest in biomarkers and their potential to help answer one of the biggest questions in ALD: who will develop disease?

At the 2026 Annual Meeting and Patient Learning Academy, Dr. Lund will present Clarity in the Crystal Ball: Predicting Phenotypes with Biomarkers, sharing his latest research and what it could mean for predicting who will develop disease.

Better prediction could help improve monitoring, guide treatment decisions, and move us toward more personalized care.

Another important step on our Pathway to a Cure. 💙

We’re one month away from our 2026 Annual Meeting and Patient Learning Academy, taking place November 6–7 in Salt Lake C...
10/06/2026

We’re one month away from our 2026 Annual Meeting and Patient Learning Academy, taking place November 6–7 in Salt Lake City, Utah!

Jesse Torrey will present Life Between Appointments: Finding Purpose, Joy and Community While Living with ALD. As a licensed professional counselor who leads ALD Connect’s mental health program and also brings lived experience with ALD, Jesse understands both the clinical and personal sides of navigating life with this disease.

Her session will explore how to find balance in a complicated and often unsteady realities of life with ALD, and how to make the most of life between appointments. 💙

Learn more: https://aldconnect.org/get-involved/annual-meeting-and-patient-learning-academy/

10/05/2026

Meet Taylor Kane – Remember The Girls

Remember The Girls is a global organization dedicated to fighting the stigma faced by women and girls with X-linked conditions, including ALD.💙

Taylor will be attending our 2026 Annual Meeting and Patient Learning Academy in Salt Lake City, Utah to share an update about the status of women and girls with ALD around the world.🌎

Join us this November to connect with her and other members of our newly formed Global ALD Advocacy Network!

Register here: https://aldconnect.org/get-involved/annual-meeting-and-patient-learning-academy/

Address

35 Village Road Suite 100 #353306
Middleton, MA
01949

Telephone

+18335253266

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