In alphabetical order by section:
Neurocognitive and mental health impact of adrenoleukodystrophy across the lifespan: Insights for the era of newborn screening; Pierpont, R., Isaia, A., McCoy, E., Brown, S., Gupta, A., & Eisengart, J. (2022) https://onlinelibrary.wiley.com/doi/epdf/10.1002/jimd.12581
Decision making about treatment
Communicating about your child’s diagnosis and treatment
Preparing for treatment: What to pack in your suitcase and in your heart
What to expect during treatment
Life After Transplant
Neurocognitive and mental health impact of adrenoleukodystrophy across the lifespan: Insights for the era of newborn screening; Pierpont, R., Isaia, A., McCoy, E., Brown, S., Gupta, A., & Eisengart, J. (2022) https://onlinelibrary.wiley.com/doi/epdf/10.1002/jimd.12581
Decision making about treatment
- ALD Experts - Find ALD Experts by State in the US: https://aldnewbornscreening.org/ald-experts
- Hematopoietic Stem Cell Transplantation: https://adrenoleukodystrophy.info/treatment-options/hematopoietic-stem-cell-transplantation
Communicating about your child’s diagnosis and treatment
- CaringBridge: https://www.caringbridge.org/
- National Respite Locator: https://archrespite.org/respitelocator
- Relationship talks: Staying together through a child’s illness: https://answers.childrenshospital.org/relationship-child-illness/
- Respite Care Studies:
- Harper, A., Dyches, T.T., Harper, J., Roper, S.O., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. J Autism Dev Disord, 43, 2604-2616. DOI 10.1007/s10803-013-1812-0
- Robertson, J., Hatton, C., Wells, E., Collins, M., Langer, S., Welch, V., & Emerson, E. (2011). The impacts of short break provision on families with a disabled child: An international literature review. Health and Social Care in the Community, 19(4), 337-371. doi: 10.1111/j.1365-2524.2010.00977.x
- Strunk, J.A. (2010). Respite care for families of special needs children: A systematic review. J Dev Phys Disabil, 22, 615-630. DOI 10.1007/s10882-010-9190-4
- Sibshops: https://siblingsupport.org/sibshops/
- Super Sam vs. the Marrow Monsters: A Guide to BMT for Children & Their Families: https://www.youtube.com/watch?v=RyczT6s-ilw&feature=youtu.be
Preparing for treatment: What to pack in your suitcase and in your heart
- Better Help - Find a therapist: https://www.betterhelp.com/
- Good Therapy - Find a therapist: https://www.goodtherapy.org/
- Groh Family Tips for ALD Transplant: https://xoutald.org/blog/f/groh-family-tips-for-transplant
- Meditation: A simple, fast way to reduce stress - https://www.mayoclinic.org/tests-procedures/meditation/in-depth/meditation/art-20045858
- Psychology Today - Find a therapist: https://www.psychologytoday.com/us/therapists
- Self-care ideas: 32 free ways to look after yourself: https://www.groovnow.com/blog/self-care-ideas-32-free-ways-to-look-after-yourself
- Testicular Cryopreservation Process (video): https://youtu.be/amd1gelPbT4
What to expect during treatment
- ALD Alliance
- Contact Miranda McAuliffe (email: [email protected] phone: 917-860-3756) or Elisa Seeger (email: [email protected] phone: 917-750-9390)
- ALD Alliance Aidan’s Gifts - Financial support: contact Elisa Seeger ([email protected])
- ALD Connect Community Calls: https://aldconnect.org/community-calls/
- ALD Connect Financial Assistance: https://aldconnect.org/financialassistance/
- ALD Family Support: https://www.aldalliance.org/family-support.html
- American Association on Health and Disability - Federal Disability Resources: https://aah d.us/public-policy/federal-disability-resources/
- Be the Match Group Support: https://bethematch.org/patients-and-families/support-for-you-and-your-family/group-support/#:~:text=Ask%20your%20transplant%20center%20social,finding%20resources%20in%20your%20area.
- Bone Marrow Transplant for Children - Transplant process: https://www.stanfordchildrens.org/en/topic/default?id=bone-marrow-transplant-for-children-90-P03062
- Bone Marrow Transplantation - What to expect: https://www.cincinnatichildrens.org/service/b/bone-marrow/videos
- Child Life Specialists: https://www.childlife.org/docs/default-source/Press-Room-News/7-facts-about-child-life-specialists-_-health-wellness-_-us-news.pdf?sfvrsn=14a2a34d_4
- Facebook: ALD Family Support Group (557 members): https://www.facebook.com/groups/1566928980234525
- Facebook: ALD Support Group (1.4k members): https://www.facebook.com/groups/169527343091772
- Family Voices: https://familyvoices.org/
- Healthcare Navigators: https://localhelp.healthcare.gov/#/
- Make-A-Wish - Refer a child: https://wish.org/refer-a-child
- Medicaid & CHIP Coverage: https://www.healthcare.gov/medicaid-chip/getting-medicaid-chip/
- Miracle Flights - Free flights for life-changing medical care away from home: https://miracleflights.org/
- Private Insurance Appeals: https://www.healthcare.gov/appeal-insurance-company-decision/appeals/
- Reaching Families Advocacy and Support Group - Developmental Disability Services By State: https://reachfamilies.org/resources/developmental-disability-services-and-medicaid-waiver-programs/
- Redtreehouse.org - Financial support for children with special needs and medical challenges: https://www.redtreehouse.org/content/funding-and-grants-for-children-with-health-needs-and-disabilities
- Ronald McDonald House - Housing support & resources to families away from home: https://rmhc.org/
- Supplemental Security Income: https://www.ssa.gov/benefits/ssi/
- The National Organization for Rare Diseases (NORD) - Financial assistance links & resources: https://rarediseases.org/for-patients-and-families/help-access-medications/financial-assistance/
- USA.gov Disability Services: https://www.usa.gov/disability-services
Life After Transplant
- ALD Alliance
- Contact Miranda McAuliffe (email: [email protected] phone: 917-860-3756) or Elisa Seeger (email: [email protected] phone: 917-750-9390)
- ALD Alliance Aidan’s Gifts - Financial support: contact Elisa Seeger ([email protected])
- ALD Connect Community Calls: https://aldconnect.org/community-calls/
- ALD Connect Financial Assistance: https://aldconnect.org/financialassistance/
- ALD Family Support: https://www.aldalliance.org/family-support.html
- The Arc - https://thearc.org/
- The Arc Resource Directory - https://thearcatschool.org/directory/?_ga=2.200240174.1802029291.1655158231-1976510616.1655158231
- The Arc Education Overview - https://thearc.org/our-initiatives/education/
- American Association on Health and Disability - Federal Disability Resources: https://aahd.us/public-policy/federal-disability-resources/
- Be the Match Group Support: https://bethematch.org/patients-and-families/support-for-you-and-your-family/group-support/#:~:text=Ask%20your%20transplant%20center%20social,finding%20resources%20in%20your%20area
- Better Help - Find a therapist: https://www.betterhelp.com/
- Bone Marrow Transplant for Children - Transplant process: https://www.stanfordchildrens.org/en/topic/default?id=bone-marrow-transplant-for-children-90-P03062
- Bone Marrow Transplantation - What to expect: https://www.cincinnatichildrens.org/service/b/bone-marrow/videos
- Child Life Specialists: https://www.childlife.org/docs/default-source/Press-Room-News/7-facts-about-child-life-specialists-_-health-wellness-_-us-news.pdf?sfvrsn=14a2a34d_4
- Conservatorship (see Guardianship)
- Courageous Parents Network: www.courageousparentsnetwork.org
- Difference Between IEPs and 504 Plans - https://www.understood.org/en/articles/the-difference-between-ieps-and-504-plan
- Facebook: ALD Family Support Group (557 members): https://www.facebook.com/groups/1566928980234525
- Facebook: ALD Support Group (1.4k members): https://www.facebook.com/groups/169527343091772
- Family Voices: https://familyvoices.org/
- Federal Partners in Transition Fact Sheet: https://www.dol.gov/sites/dolgov/files/odep/pdf/fpt_fact_sheet-transition_02_05_15.pdf
- Good Therapy - Find a therapist: https://www.goodtherapy.org/
- Guardianship: https://www.friendshipcircle.org/blog/2012/10/16/when-your-child-turns-18-a-guide-to-special-needs-guardianship/ and/or https://www.caregiver.org/resource/conservatorship-and-guardianship/
Healthcare Navigators: https://localhelp.healthcare.gov/#/ - Hmm, How can I help? PDF Download
- Living Wills: https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/living-wills/art-20046303
- Make-A-Wish - Refer a child: https://wish.org/refer-a-child
- Medicaid & CHIP Coverage: https://www.healthcare.gov/medicaid-chip/getting-medicaid-chip/
- Meditation: A simple, fast way to reduce stress - https://www.mayoclinic.org/tests-procedures/meditation/in-depth/meditation/art-20045858
- Miracle Flights - Free flights for life-changing medical care away from home: https://miracleflights.org/
- PACER Center - www.pacer.org
- PACER Special Education Overview - https://www.pacer.org/parent/Private Insurance Appeals: https://www.healthcare.gov/appeal-insurance-company-decision/appeals/
- Psychology Today - Find a therapist: https://www.psychologytoday.com/us/therapists
- Reaching Families Advocacy and Support Group - Developmental Disability Services By State: https://reachfamilies.org/resources/developmental-disability-services-and-medicaid-waiver-programs/
- Redtreehouse.org - Financial support for children with special needs and medical challenges: https://www.redtreehouse.org/content/funding-and-grants-for-children-with-health-needs-and-disabilities
- Relationship talks: Staying together through a child’s illness: https://answers.childrenshospital.org/relationship-child-illness/
- Representative Payee Program: https://www.ssa.gov/payee
- Respite Locator: https://archrespite.org/respitelocator
- Respite Care Studies:
- Harper, A., Dyches, T.T., Harper, J., Roper, S.O., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. J Autism Dev Disord, 43, 2604-2616. DOI 10.1007/s10803-013-1812-0
- Robertson, J., Hatton, C., Wells, E., Collins, M., Langer, S., Welch, V., & Emerson, E. (2011). The impacts of short break provision on families with a disabled child: An international literature review. Health and Social Care in the Community, 19(4), 337-371. doi: 10.1111/j.1365-2524.2010.00977.x
- Strunk, J.A. (2010). Respite care for families of special needs children: A systematic review. J Dev Phys Disabil, 22, 615-630. DOI 10.1007/s10882-010-9190-4
- Ronald McDonald House - Housing support & resources to families away from home: https://rmhc.org/
- Self-care ideas: 32 free ways to look after yourself: https://www.groovnow.com/blog/self-care-ideas-32-free-ways-to-look-after-yourself
- Sibshops: https://siblingsupport.org/sibshops/
- Supplemental Security Income: https://www.ssa.gov/benefits/ssi/
- Supported Decision Making: ○ https://supporteddecisions.org/about-supported-decision-making/
- The National Organization for Rare Diseases (NORD) - Financial assistance links & resources: https://rarediseases.org/for-patients-and-families/help-access-medications/financial-assistance/
- United Disabilities Services Adaptive Devices: https://udservices.org/blog/adaptive-devices-people-disabilities
- USA.gov Disability Services: https://www.usa.gov/disability-services
