Patient Resources
Make a DonationPatient Resources
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Brochures
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 PDFEin Leitfaden zum Verständnis von CCDS Zerebralen Kreatinmangelsyndromen
German Guide to Understanding CCDS Brochure
Ein Leitfaden zum Verständnis von CCDS Zerebralen Kreatinmangelsyndromen PDFHandleiding en uitleg van CCDS Cerebrale Creatine Deficiëntie Syndromen
Dutch Guide to Understanding CCDS Brochure
Handleiding en uitleg van CCDS Cerebrale Creatine Deficiëntie Syndromen PDFPatient Registry Brochure
This brochure explains the benefits of joining the patient registry and how to get started. It is meant for CCDS caregivers.
Patient Registry Brochure PDFOutreach 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]
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Creatine Decoded
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 hereCreatine Decoded: 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 hereCreatine Decoded: 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 hereCreatine Decoded: 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 -
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.comCompounding 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 InstructionsPartnership 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.
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Government Aide
AAP’s State Specific Fact Sheets on Medicaid and CHIP
U.S. Department of Labor, Office of Disability Employment Policy
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.govMedicaid and Medicare
All about medicaid and medicare from the Centers for Medicare and Medicaid services.
www.cms.govBenefits.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.govInsure 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 -
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.orgPatient 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.
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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.orgThe 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.comKids Quest
Created by the Center for Disease Control and Prevention- a government agency. Helps kids learn about various disabilities and health.
www.cdc.govNational 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.orgWrightslaw
Reliable information about special education law and advocacy for children with disabilities.
www.wrightslaw.comThe 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.
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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.comEpilepsy Foundation
Works with children and adults affected by seizures through research, education, advocacy, and service.
www.epilepsy.comThe 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.orgWe Move/Life in Motion
A comprehensive resource for movement disorder information and movement disorder activities.
www.wemove.org -
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.govHope, Inc.
Provides recreational opportunities for children who are physically or mentally challenged, and their families.
www.hopeinc.orgNational 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.orgWilderness Inquiry
Providing outdoor adventures for people of all ages and abilities.
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Assist Technology
Adaptive Access
Resources for products and services for people with disabilities.
www.adaptiveaccess.comAdaptive Mall
Special Needs Toys
Includes sensory stimulation products, adaptive swing sets, games, and multi-sensory environments.
www.specialneedstoys.comSpeech and Language
Kid friendly apps for your Apple iPad.
www.friendshipcircle.orgTACA
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
Inclusion of particular professionals, services, products, or organizations does not imply endorsement by the ACD.
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