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.

05/19/2026

Join us for "Connected, Not Consumed", an upcoming webinar focused on navigating life with ALD and maintaining balance, boundaries, and emotional well-being. Living with a rare disease can feel overwhelming, especially when symptom management, advocacy, caregiving, monitoring, and constant information-sharing become part of everyday life. This webinar will explore how individuals and families can stay informed, engaged, and connected to the ALD community without feeling consumed by it.

The webinar will feature Dr. Torri Jones, from Children’s Hospital of Philadelphia (CHOP), and Jesse Torrey, MA, LPC, ALD Connect Board Member, who will share perspectives on navigating the emotional realities of ALD while remaining connected in ways that feel supportive and sustainable. Topics will include emotional burnout, navigating social media and online support spaces, managing uncertainty, setting healthy boundaries, coping with symptoms and stressors related to ALD, and finding sustainable ways to participate in advocacy and community life.

The discussion will be relevant for symptomatic individuals living with ALD, parents of minor children with ALD, individuals in the monitoring stage, caregivers, and long-time members of the community.

Whether you are personally affected by ALD, caring for a loved one, or supporting a child through diagnosis or monitoring, this session aims to provide a supportive space for reflection, connection, and conversation.

Join us on May 28, 2026 at 7pm Eastern. Register here: https://lp.constantcontactpages.com/ev/reg/kdazsqt

05/16/2026

Our May Community Calls are posted! Register using the link below.

Join us this month for our Structure Mental Health call, "Laughing Through the Leaks". This will be a candid and supportive conversation about bladder accidents, urgency, and urinary symptoms in ALD. These challenges can be frustrating, embarrassing, isolating, and sometimes unexpectedly funny. Through open discussion and shared experiences, we hope to create space for honesty, connection, and a little laughter along the way. Whether you are personally affected, supporting a loved one, or simply looking to learn from others in the community, all are welcome.

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

05/10/2026

To every mother in our ALD community: we see you, we appreciate you, and we are thinking of you today.

Sending love to the moms celebrating, grieving, worrying, advocating, and carrying more than most people will ever know.

Happy Mother’s Day. 💙

05/05/2026

Are you interested in sharing your family’s monitoring experience with ALD Connect? We are specifically looking to connect with families of boys who have a Variant of Uncertain Significance (VUS) in the ABCD1 gene and are currently in the monitoring stage. Your feedback will help us better understand parent perspectives during and identify the support and resources families need most.

Please reach out to us at [email protected]!

05/01/2026

Just announced! We are proud to expand our research funding efforts through our Breakthrough Research Fund with the launch of a new Collaborative Research RFP, alongside our Emerging Investigators RFP.

Together, these opportunities reflect our commitment to accelerating research and advancing progress in ALD. The Collaborative Research grants will bring multidisciplinary teams together to tackle high-impact questions, drive coordinated progress across institutions, and address unmet needs in our community. The Emerging Investigators grants support the next generation of researchers with innovative ideas and help spark their entry into ALD research.

This is a meaningful milestone for our community. Because of your engagement, partnership, and shared commitment, we are now in a position to directly invest in both bold, collaborative science and the individuals who will carry this work forward.

We look forward to reviewing applications!

04/27/2026

ALD Connect is built on connections. Through our Collaborative Research Network for ALD, we are partnering with centers around the world to unite experts and turn ideas into action.

Our network is coordinated, global effort to break down silos, align priorities, and move faster toward what matters most. We will continue to actively seek input from patients and families to help shape priorities and guide the direction of research. By bringing together the strength of our community with the momentum of science, we are accelerating progress and ensuring that discoveries reflect the needs and experiences of those who are affected.

Our Collaborative Research Network logo captures the many points of discovery in science. The bridge represents the critical connections between them and closing gaps.

More to come soon, stay tuned!

04/25/2026

At ALD Connect, we recognize the power of connection. We also know that not everyone can travel to conferences, and meaningful community should not depend on that.

This month, our Patient-Led Planning Committee introduced a new idea: ALD Connect(ions).

The goal is simple. Support small, local gatherings so community members can connect closer to home. Coffee, lunch, dinner, whatever feels right. ALD Connect would help offset the cost so it is easier to bring people together.

We are exploring this as a new initiative and would love your input. Would you be interested in hosting or attending a local meetup? Let us know below and feel free to share where you are located.

04/20/2026

Our 2025 Annual Report is complete, reflecting a year of meaningful progress, strong collaboration, and continued growth across our work. We advanced key initiatives, strengthened partnerships, and reached important milestones along the way. We have continued that progress into 2026 and remain energized to carry that momentum forward.

Read it here:https://aldconnect.org/wp-content/uploads/2026/04/ALD-Connect-2025-Annual-Report.pdf

04/18/2026

We are proud to share Dr. Josh Bonkowsky’s new book!

Dancing Eyes, Dancing Feet takes readers inside a pediatric neurology clinic, where children face rare and often devastating neurological conditions. Through compelling patient experiences, the book captures the uncertainty, resilience, and profound impact these illnesses have on families.

At the same time, it highlights a turning point in medicine. Advances in genetics and personalized care are transforming how these conditions are understood, diagnosed, and treated, offering new clarity and real hope where little existed before.

Order here: https://www.amazon.com/Dancing-Eyes-Feet-Frontline-Revolution/dp/1998841383/ref=sr_1_1?crid=KRPWUX27XRHV&dib=eyJ2IjoiMSJ9.7IGiY-NqrjVM76RhcaKllX2ld53sO_0taUy-VTEzt82ycUxJqWV0tes15E0WgNJIfzjIjNARjqcA6jIS9NJrfAoKqShdkwhlVlwss2Cug8k.lqdJ2BdcCpWULN2Giz8Ye1wMHtgVM6F9Z9V2WtoGb8E&dib_tag=se&keywords=bonkowsky&qid=1776529130&sprefix=bonkowsky%2Caps%2C252&sr=8-1

04/15/2026

We’re excited to continue our webinar series with a session on IEPs and 504 Plans for the ALD community!

This webinar will feature Sydne Pantaleon-Plunkett and Kelly Waterman, who together bring a powerful combination of professional expertise and lived experience.

Sydne is a woman with ALD, a mother, a school social worker, and a licensed mental health therapist. She works directly within the public education system on eligibility, IEP and 504 development, and ensuring supports are implemented effectively. As a parent of a child with ALD, she also understands firsthand how to navigate and advocate within the school setting.

Kelly is a Registered Nurse with 26 years of experience and a dedicated patient advocate, as well as a mother to two boys with ALD. Since her younger son was diagnosed through newborn screening, she has navigated both the healthcare and education systems, including extensive experience with IEPs and 504 Plans.

Join us for a practical, real-world discussion on how to advocate for appropriate supports and set students up for long-term success.

Register here: https://lp.constantcontactpages.com/ev/reg/x9j7vve

Address

35 Village Road Suite 100 #353306
Middleton, MA
01949

Telephone

+18335253266

Website

http://www.aldconnect.org/

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