Community Calls

The Cerebral ALD Community Call is a resource for patients and caregivers at every stage of their cerebral ALD journey—whether pre-transplant, post-transplant, or non-transplant. We understand that navigating the complexities of Cerebral ALD can be overwhelming, and finding time for support can be challenging. This call provides a space for sharing experiences, gaining insights, and receiving encouragement from others who truly understand what you’re going through. We’re committed to making these calls as accessible and valuable as possible so that more of our community can benefit from our wonderful support network. We invite you to join us whenever you can.

Facilitated by Jesse Torrey.

Jesse Torrey is a therapist, writer and mother. She is a symptomatic female and her son, Jack, has cerebral ALD and is 17 years post-transplant.

The Symptomatic Women Community Call is a dedicated space for women of all ages and at any stage of your ALD journey, whether you are experiencing mild or severe symptoms. This group offers a supportive environment where you can connect with others who share similar challenges, exchange insights, and find strength in community. All experiences and perspectives are invaluable in shaping the conversations and providing support. This call is a resource for addressing the unique needs of symptomatic women, and we’re committed to ensuring that this important part of our community feels heard, supported, and empowered.

Facilitated by Kathleen O’Sullivan-Fortin & Julie Chu.

Kathleen is a co-founder of ALD Connect. She serves on the Board of Directors as Treasurer and General Counsel. Kathleen is a symptomatic woman with ALD and an ALD mom. Over the past eleven years, Kathleen has taken on roles as a patient advocate, industry liaison, developer of programming, and facilitator of many events. Kathleen has served on the FDA’s Cellular, Tissue and Gene Therapies Advisory Committee, the ALD Family Weekend planning committee, the NIH RDCRN CPAG committee, the EveryLife Foundation RDLA, the Alliance of Regenerative Medicine Patient Advocacy Committee, the CPSA Analytics Charitable Foundation, and the ALD Connect Industry Advisory Council.

Julie Chu is a symptomatic woman with ALD. She was diagnosed in 2011, along with her brother. She lives in New York City and has been an active part of our ALD Connect community. Julie is also a breast cancer survivor. She believes that her continued exercise regimen and healthier lifestyle have helped to keep the progression of ALD at bay. Julie will be co-moderating our Community Call for Symptomatic Women.

The Community Call for Men with AMN is a dedicated forum where men facing the unique challenges of AMN can come together to share their experiences and support one another. Whether you’re dealing with early symptoms or more advanced stages, this call provides a space for open discussion, practical advice, and camaraderie among those who truly understand what you’re going through. We welcome new participants and aim to foster a strong, supportive community where every voice matters. At this time, the call is only for men with AMN. Please reach out to us if you are a caregiver who is interested in learning more from the men in our community.

Facilitated by Ken Dieffenbach and Tim Mathwig.

Ken was diagnosed with AMN at age 31 and lives in central Pennsylvania. He works full time as a CAD draftsman and is highly involved in the rare disease community as a whole. His biggest suggestion is to find your community and ALD Connect allowed him to do that.

Tim lives in Dallas, Texas. He is married and has a son and 2 stepchildren  – who are all adults now. Tim was diagnosed with AMN and Addison’s Disease when he was 18 years old. He started taking hydrocortisone right away for Addison’s, but he remained healthy and symptom-free for over a decade. He started experiencing all the usual AMN symptoms around age 30. Now, he walks with a cane full time and use a scooter around the house and a wheelchair for longer distances in public.

The Newborn Screening, Young Families, and Parents of Asymptomatic Children Community Call offers a supportive space for those navigating the early stages of an ALD diagnosis. Whether your child has recently been identified through newborn screening or you’re a parent of an older asymptomatic child, this call provides an opportunity to connect with others who share similar experiences and concerns. We encourage participation from new families to help build a community where you can find guidance, share your journey, and support one another through the unique challenges of managing ALD in its earliest stages.

Facilitated by Kathleen O’Sullivan-Fortin & Christie Higuera.

Kathleen is a co-founder of ALD Connect. She serves on the Board of Directors as Treasurer and General Counsel. Kathleen is a symptomatic woman with ALD and an ALD mom. Over the past eleven years, Kathleen has taken on roles as a patient advocate, industry liaison, developer of programming, and facilitator of many events. Kathleen has served on the ALD Family Weekend planning committee, the NIH RDCRN CPAG committee, the EveryLife Foundation RDLA, the Alliance of Regenerative Medicine Patient Advocacy Committee, the CPSA Analytics Charitable Foundation, and the ALD Connect Industry Advisory Council.

Christie Higuera is the mother of a son and daughter with adrenoleukodystrophy (ALD) and the Program Director at the Center for Rare Neurological Diseases at Massachusetts General Hospital. She also serves on the Massachusetts Newborn Screening Advisory Council. Driven by her personal experience, Christie is deeply committed to supporting parents of newly diagnosed children, helping them navigate the complexities of ALD and the healthcare system with compassion.

The Structured Mental Health Community Call is a focused support space dedicated to exploring different mental health topics each month. It is designed to encourage reflection and meaningful discussion. This call invites participants to consider the chosen topic in advance, allowing for more thoughtful engagement during the session. Occasionally, we provide a worksheet prior to the call to help guide your reflections and prepare for the conversation. This structured approach helps create a more impactful experience, fostering a supportive environment where participants can share insights, learn from one another, and find strength in community.

Facilitated by Jesse Torrey.

Jesse Torrey is a teacher, writer and mother. Her son, Jack, has ALD and  is 14 years post-transplant.

The Spanish Community Call is a collaborative effort between ALD Connect and Fundación Lautaro te Necesita, based in Buenos Aires, Argentina. This call is conducted entirely in Spanish and is open to anyone affected by ALD, offering a supportive space for Spanish-speaking individuals to connect, share their experiences, and provide mutual support. It’s a unique opportunity to build connections and foster a sense of community within the Spanish-speaking ALD population.

Facilitated by Verónica de Pablo and Jean Cappello.

Verónica de Pablo is a Primary School Director and lawyer. She is the mother of 3 children (Guadalupe, Nazareno and Lautaro). With her husband Eduardo Javier (who passed away in November 2022) they created the FUNDACIÓN LAUTARO TE NECESITA after their son Lautaro was diagnosed with Metachromatic Leukodystrophy (MLD) in 2011. Lautaro received a bone marrow transplant (Guadalupe was the donor) at Duke Children Hospital in 2012 and the progression of his disease has stopped. Since then, they have dedicated  to raising awareness about leukodystrophies and promoting research and education to improve diagnosis and treatment in Latin America.

Jean Cappello moved as a bride of 20 to Santiago, Chile in 1966 where she learned Spanish a la fuerza. She also started her teaching career and had the first of her two children, Juan Pablo and Jesse Anna. Once she and her husband Juan Carlos moved back to the States, they had their son Philip and Jean did graduate work in Spanish getting her Ph.D. from Rutgers in 1993. She taught at Rutgers and then Fordham University.

Jean and Juan had never heard of Adrenoleukodystrophy until their daughter’s 8 year old son Jack was diagnosed in 2007. He had a successful stem cell transplant, and while his life is very complicated, he is thriving. Jean and Jesse both have the ALD mutation and are somewhat symptomatic. Jesse Torrey is very involved with ALD Connect and has spoken at many of their conferences and hosts several of their support calls. Jean continues to host with Verónica de Pablo the support call in Spanish.

Connecting Communities is a collaborative initiative between ALD Connect and Alex TLC, based in London, UK. This call brings together individuals from across the globe to share their experiences, offer support, and build a stronger international ALD community. Whether you’re participating from the Untied States, the United Kingdom, or elsewhere, this call provides an opportunity to connect with others who understand the challenges of living with ALD. This call embodies the spirit of global collaboration, uniting communities across oceans.

Facilitated by Kathleen O’Sullivan-Fortin and Karen Harrison.

Kathleen is a co-founder of ALD Connect. She serves on the Board of Directors as Treasurer and General Counsel. Kathleen is a symptomatic woman with ALD and an ALD mom. Over the past eleven years, Kathleen has taken on roles as a patient advocate, industry liaison, developer of programming, and facilitator of many events. Kathleen has served on the ALD Family Weekend planning committee, the NIH RDCRN CPAG committee, the EveryLife Foundation RDLA, the Alliance of Regenerative Medicine Patient Advocacy Committee, the CPSA Analytics Charitable Foundation, and the ALD Connect Industry Advisory Council.

Karen lives in the UK and has identical twin sons affected by ALD. They were diagnosed over 20 years ago, sadly one of her sons passed away aged 8 and her other son is now 28 and severely disabled.  She is the Support Services Manager for Alex The Leukodystrophy Charity and supports families affected by ALD and raises awareness of the condition.