ALD Connect

Mental Health

At ALD Connect, we recognize that managing adrenoleukodystrophy extends beyond physical health to encompass mental and emotional well-being. Our Mental Health programming provides support and resources for patients and families coping with the psychological impact of this disease. We aim to ensure that all members of the ALD community receive comprehensive care that supports their overall quality of life and well-being.

Jesse Torrey, MA, LPC

Jesse Torrey helps lead our Mental Health programming. Jesse is a Licensed Mental Health Counselor. She received her MA in Counseling for Mental Health and Wellness from New York University. She is committed to helping adults, children, adolescents and emerging adults as they navigate challenges.

Jesse is also an amazing ALD advocate. She and her son, Jack, have ALD. We are so grateful for her allowing us to benefit from her lived experience and professional expertise. She published Smiles & Duct Tape, a chronicle of her son Jack’s ALD diagnosis and transplant, in 2016. Jesse continues to share her thoughts and her journey with ALD on her blog.

Visit Smiles & Duct Tape
Hosted by Jesse

Mental Health Community Calls

The confidential calls take place on Zoom, and all ALD patients and caregivers are welcome to join. These are the topics we’ve covered so far. Sometimes, Jesse makes customized worksheets on the topic for the ALD community. Click the links below to see our past worksheets and get thinking about the topic.

Community CalendarCommunity Calls
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Control Wheel

During our April 2024 Mental Health Community Call, ALD patients and families discussed what they can control and what they can’t. Take a look at what they said.

Download The Control Wheel

Mental Health Resources

Mental Health Wishlist

ALD Connect has curated an Amazon wishlist of mental health-related items that you may find useful for yourself, your children, or to purchase as gifts for your loved ones. The list includes books, activity and coloring books, door tags, mood stickers, and more. Let us know if you find another item that we should add!

Click here to view our Amazon Wishlist!

Directories to Find a Therapist

Courageous Parents Network

The Courageous Parents Network has wonderful resources for families supporting children with serious medical conditions. Among their resources include information about marriage/partnership, sibling relationships, building your support network, and taking care of yourself.

Learn more about the Courageous Parents Network.

Understanding Therapy – What Do the Letters Mean?

All of these licenses show that people are trained mental health therapists:

  • Licensed clinical social worker (LCSW)
  • Licensed marriage and family therapist (LMFT)
  • Licensed mental health counselor (LMHC)
  • Licensed professional counselor (LPC)
  • Psychologists (PhD or PsyD)
  • Psychiatrist (MD or DO)

Psychologists with PhDs often specialize on testing and research, while psychologists with PsyDs focus more on clinical work.

Psychiatrists are able to prescribe medication and most therapists work together with psychiatrists if there is indication that medication is necessary.

Having a strong connection with a therapist is perhaps the most important qualification when searching for a therapist.

Jesse’s Tips for Finding a Therapist

1. Assess your financial resources.

Consider whether working with insurance or self-pay is a better fit for you – keep in mind that a 50-minute therapy session can range between $100-$300. Reach out to your insurance carrier to find out if they have a list of in-network therapist and/or what they will reimburse for out-of-network providers.

2. Searching for a therapist

Word of mouth may be a wonderful first step when looking for a good match. Directories like https://www.psychologytoday.com,
https://therapist.com and  https://www.goodtherapy.org/ can be helpful.

3. Ask for a 15-minute free consultation.

Mental Health Webinars

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Supporting the ALD Family

Child life specialist Katie Weagle, MS, CCLS, spoke at ALD Connect’s 2019 Annual Meeting and Patient Learning Academy about “Supporting the ALD Family”.

ALD: The Bitter and the Sweet

In 2022, we invited psychologist MaryAnn McCarthy to our Annual Meeting and Patient Learning Academy, where she discussed, “ALD: The Bitter and the Sweet”.

ALD Associated Trauma

We invited Bruce McClary, LCSW-C, CCM, Jesse Torrey, LAC, and Amber Salzman, PhD to discuss ALD-associated trauma at our 2023 Annual Meeting and Patient Learning Academy.

ALD Siblings – What Works, What Hurts

ALD Connect was proud to present a special webinar with Jesse Torrey, Anna Torrey, Kathleen O’Sullivan-Fortin, and Maggie Fortin in 2023. This is a great resource for families who have unaffected siblings.

Taking Care of the Caretakers

At our 2021 Bootcamp for Cerebral ALD Families, we invited Blyth Lord, Founder of the Courageous Parents Network, and Laura Will, Nurse Practitioner and rare disease parent, to discuss “Caring for the Caregiver”.

Mental Health and Impact on Relationships and Families

At our 2021 Bootcamp for Newborn Screening and Non-Cerebral ALD Families, we invited pediatric psychologist Sarah Tarquini, PhD alongside ALD parents Meg Pimental and Bill and Kate Groel to discuss the impact of ALD on relationships and families.

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Useful Links

Resources
Resources
Community Calendar
Community Calendar
Financial Assistance
Financial Assistance

Get In Touch

ALD Connect is dedicated to helping patients, families, and healthcare providers facing the complexities of ALD. If you have any questions, are seeking support, or want more information about our services, we invite you to reach out. Connect with us today, and let us offer the assistance and resources you need.

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