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
This brochure explains the benefits of joining the patient registry and how to get started. It is meant for CCDS caregivers.
Patient Registry Brochure PDF
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 firstname.lastname@example.org.
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.
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
The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
*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.
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.
All about medicaid and medicare from the Centers for Medicare and Medicaid services.
Benefits.gov (formerly GovBenefits.gov) was launched in an effort to provide citizens with easy, online access to government benefit and assistance programs.
Free or low-cost health insurance in each state for low income families.
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.
A PDF booklet (CA) of information regarding conservatorship. Please see each state’s for legal conservatorships and legal filing.
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.
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.
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.
Created by the Center for Disease Control and Prevention- a government agency. Helps kids learn about various disabilities and health.
Federal information source for disabilities, special education laws, No Child Left Behind, educational practices, IEP resources, and state resources.
Reliable information about special education law and advocacy for children with disabilities.
A guide to individualized education programs for teachers and parents. Learn about the IEP process, including IEP meetings, goals, and accommodations.
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.
Works with children and adults affected by seizures through research, education, advocacy, and service.
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.
A comprehensive resource for movement disorder information and movement disorder activities.
Information from the TSA about the screening and security process for air travelers with disabilities, or call 1-855-787-2227.
Provides recreational opportunities for children who are physically or mentally challenged, and their families.
Outdoor sports and therapeutic recreation programs that positively impact the lives of people with physical, cognitive, emotional, or behavioral challenges.
Providing outdoor adventures for people of all ages and abilities.
Resources for products and services for people with disabilities.
Includes sensory stimulation products, adaptive swing sets, games, and multi-sensory environments.
Kid friendly apps for your Apple iPad.
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.
Inclusion of particular professionals, services, products, or organizations does not imply endorsement by the ACD.