Patient Resources

Patient Resources

  1. Assist Technology

    Adaptive Access

    Resources for products and services for people with disabilities.
    www.adaptiveaccess.com

    Adaptive Mall

    www.adaptivemall.com

    Special Needs Toys

    Includes sensory stimulation products, adaptive swing sets, games, and multi-sensory environments.
    www.specialneedstoys.com

    Speech and Language

    Kid-friendly apps for your Apple iPad.
    www.friendshipcircle.org

    TACA

    The Talk About Curing Autism (TACA) goal is to provide education, support, and information to parents to help their children diagnosed with autism be the best they can be, with the hope of recovery.
    www.tacanow.org

  2. Brochures

    CreatineInfo Registry Brochure

    This brochure answers frequently asked questions about the CreatineInfo Registry and explains why this tool is essential for CCDS research.

    CreatineInfo Registry Brochure

    Guide to Understanding CCDS Brochure

    This brochure gives AGAT, GAMT, and CTD symptom and diagnosis information. It is designed for caregivers, diagnosing physicians, and others seeking a better understanding of Cerebral Creatine Deficiency Syndromes.
    Guide to Understanding CCDS Brochure PDF

    Ein Leitfaden zum Verständnis von CCDS Zerebralen Kreatinmangelsyndromen

    German Guide to Understanding CCDS Brochure
    Ein Leitfaden zum Verständnis von CCDS Zerebralen Kreatinmangelsyndromen PDF

    Handleiding en uitleg van CCDS Cerebrale Creatine Deficiëntie Syndromen

    Dutch Guide to Understanding CCDS Brochure
    Handleiding en uitleg van CCDS Cerebrale Creatine Deficiëntie Syndromen PDF

    Outreach Brochure

    This brochure provides an overview of the mission of ACD. It is a great educational piece for fundraising and building awareness.
    Outreach Brochure PDF

    *For hard copies of our brochures, email [email protected]

  3. Creatine Decoded

    CCDS Gene Therapy Research

    This essay was written by Laura Trutoiu, ACD Director of Research, with support from Erin Coller, ACD Director of Communications, and Sangeetha Iyer, ACD Scientific Advisor.
    Read the full essay here

    Featured Scientist, Dr. Jonathan Schlebach PhD

    This essay was written by Celeste Graham, ACD Director of Education, with the support of Sangeetha Iyer, ACD Scientific Advisor.
    Read the full essay here

    Behavior Support and the First ACD Webinar for Parents

    This essay was written by Celeste Graham, ACD Director of Education with support from Laura Trutoiu, ACD Director of Research and Heidi Wallis, ACD President.
    Read the full essay here

    Pharmacochaperoning & CTD Research Participation

    This essay was written by Erin Coller with the support of Laura Trutoiu, Director of Research, and Sangeetha Iyer, ACD Scientific Advisor.
    Read the full essay here

  4. CreatineInfo Registry

    CreatineInfo One-Pager

    Read here

    CreatineInfo FAQs

    Read here

    CreatineInfo Tip Sheet

    Read here

    CreatineInfo Registration Procedure

    Read here

  5. Family Services

    Family Voices

    A national network of state-based programs aimed at achieving family-centered care for children and young adults with disabilities and health care needs. Provides families with the tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.
    www.familyvoices.org

    The Exceptional Parent

    A magazine that provides information, support, ideas, encouragement, and outreach for parents and families of children with disabilities and the professionals who work with them.
    www.eparent.com

    Kids Quest

    Created by the Center for Disease Control and Prevention- a government agency. Helps kids learn about various disabilities and health.
    www.cdc.gov

    National Dissemination Center for Children with Disabilities (NICHCY)

    Federal information source for disabilities, special education laws, No Child Left Behind, educational practices, IEP resources, and state resources.
    www.parentcenterhub.org

    Wrightslaw

    Reliable information about special education law and advocacy for children with disabilities.
    www.wrightslaw.com

    The IEP Process Explained – Special Education Guide

    A guide to individualized education programs for teachers and parents. Learn about the IEP process, including IEP meetings, goals, and accommodations.
    www.specialeducationguide.com

  6. Government Aide

    AAP’s State Specific Fact Sheets on Medicaid and CHIP

    AAP.org

    U.S. Department of Labor, Office of Disability Employment Policy

    www.dol.gov

    Social Security Disability Benefits

    The Social Security Administrations provides benefits through two programs: the Social Security disability insurance program and the Supplemental Security Income (SSI) program. Learn more about these programs including eligibility, how to apply, and how to appeal a claim denial.
    www.ssa.gov

    Medicaid and Medicare

    All about medicaid and medicare from the Centers for Medicare and Medicaid services.
    www.cms.gov

    Benefits.Gov

    Benefits.gov (formerly GovBenefits.gov) was launched in an effort to provide citizens with easy, online access to government benefit and assistance programs.
    www.benefits.gov

    Insure Kids Now, US Department of Health and Human Services

    Free or low-cost health insurance in each state for low income families.
    www.insurekidsnow.gov

  7. Legal/Advocates

    Protection and Advocacy for People with Disabilities Network

    Each state has a federally mandated protection and advocacy agency that safeguards and advances the civil and human rights of people with disabilities. Agencies provide information and referral, investigate complaints of rights violations, and work to resolve complaints through mediation, dispute resolution, and litigation.

    Lanterman Regional Center Conservatorship

    A PDF booklet (CA) of information regarding conservatorship. Please see each state’s for legal conservatorships and legal filing.
    www.lanterman.org

    Patient Advocate Foundation

    Serves as a liaison between patients and their insurers, employers, and/or creditors to resolve insurance, debt crisis, and/or job retention matters related to their diagnosis.
    www.patientadvocate.org

  8. Recreational Services

    Travelers with Disabilities and Medical Conditions and Children with Disabilities

    Information from the TSA about the screening and security process for air travelers with disabilities, or call 1-855-787-2227.
    www.tsa.gov

    Hope, Inc.

    Provides recreational opportunities for children who are physically or mentally challenged, and their families.
    www.hopeinc.org

    National Sports Center for the Disabled

    Outdoor sports and therapeutic recreation programs that positively impact the lives of people with physical, cognitive, emotional, or behavioral challenges.
    nscd.org

    Wilderness Inquiry

    Providing outdoor adventures for people of all ages and abilities.
    www.wildernessinquiry.org

  9. Scholarship & Grant Opportunities

    UCB Family Epilepsy Scholarship

    In 2021, UCB will award 30 scholarships of up to $5,000 and 3 scholarships of up to $10,000 to people living with epilepsy, their family members, and caregivers pursuing higher education.

    www.ucbepilepsyscholarship.com

  10. Supplement Resources

    JoMar Labs Amino Acid Discount

    JoMar Labs offers a significant discount to CCDS families for supplements including creatine and l-ornithine-HCL. To set up an account and verify that you are an “ACD family” with a child with a CCDS, call JoMar at 1-800-538-4545.
    JoMarLabs.com

    Compounding Formulas

    The following are provided by a pharmacy that has been compounding L-Ornithine and Sodium Benzoate for many years. Please do not attempt to do this at home. Ask your child’s prescribing physician to approve these instructions and then take them to a qualified compounding pharmacy. Due to added ingredients, your compounding pharmacy and physician will need to agree upon the correct dosage for your child to reach their required treatment dosage.
    Sodium Benzoate Compounding Instructions
    L-Ornithine HCL Compounding Instructions

    Partnership for Prescription Assistance Programs

    The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
    www.pparx.org

    *Treatment should be followed under the care of a qualified physician. Do not attempt to self-diagnose or self-treat a creatine deficiency. Treatment plan changes should be made under the supervision of a physician.

    Creapure

    Creapure information

  11. Supportive Services

    Easter Seals

    Provides services to children and adults with disabilities and other special needs, and support to their families. Includes adult services, childcare, and medical help for those who qualify.
    www.easterseals.com

    Epilepsy Foundation

    Works with children and adults affected by seizures through research, education, advocacy, and service.
    www.epilepsy.com

    The ARC

    World’s largest community-based organization for people with intellectual and developmental disabilities. Works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community.
    www.thearc.org

    We Move/Life in Motion

    A comprehensive resource for movement disorder information and movement disorder activities.
    www.wemove.org

  12. Webinars

    CNF – Future Planning for Families

    Hear two different perspectives on planning for the future and supporting family members with intellectual and/or developmental disabilities.

    www.childneurologyfoundation.org

Inclusion of particular professionals, services, products, or organizations does not imply endorsement by the ACD.