An ALD diagnosis has a serious impact on the mental health of almost all patients and caregivers. Jesse Torrey helps lead our Mental Health programming.
Jesse Torrey, MA
Licensed Associate Mental Health Counselor
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.
Jesse is also an author and a blogger! 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 by the same name, https://smilesandducttape.com/.
Jesse hosts a Structured Mental Health Community Call each month.
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.
October 16, 2023: Letting Go of the What Ifs
November 16, 2023: Asking for Help
December 21, 2023: Navigating Uncomfortable Feelings
January 18, 2024: Goals for the New Year
February 15, 2024: Impact of ALD on Romantic Relationships
March 28, 2024: Anticipatory Grief
April 18, 2024: Taking Control Where We Can
May 16, 2024: Mindful, not Mind Full
June 20, 2024: Redefining Hope
July, 2024: Family and Friends
August 15, 2024: Navigating Change
September 19, 2024: The Power of Community
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.
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!
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.
Understanding Therapy – What Do the Letters Mean?
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)
All these licenses show that people are trained mental health therapists.
- 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
- 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.
- 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. - Ask for a 15-minute free consultation.
Check out one of our past webinars or Annual Meeting and Patient Learning Academy talks focused on mental health!
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.
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.
In 2022, we invited psychologist MaryAnn McCarthy to our Annual Meeting and Patient Learning Academy, where she discussed, “ALD: The Bitter and the Sweet”.
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”.
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.
Child life specialist Katie Weagle, MS, CCLS, spoke at ALD Connect’s 2019 Annual Meeting and Patient Learning Academy about “Supporting the ALD Family”.