FD-Related Resources
  

• Dr. Felicia Axelrod
  Dr. Axelrod is the Carl Seaman Family Professor in the Department of Pediatrics and Professor in the Department of Neurology at the NYU School of Medicine. She is also the principal investigator and Director of the Dysautonomia Treatment and Evaluation Center.
   

• Dr. Channa Maayan
  Dr. Maayan is the Director of the Israeli Center for Familial Dysautonomia at Hadassah Hospital in Jerusalem.
   

• Dysautonomia Treatment and Evaluation Center
  The Dysautonomia Treatment and Evaluation Center was established at NYU Medical Center in 1969 to provide care to individuals affected with the genetic disorder familial dysautonomia (FD). This patient group is a genetically homogeneous population with consistent neuropathologic lesions involving the sympathetic nervous system and unmyelinated sensory fibers. This is the only Center for FD in the United States and thus serves as a resource for patients and physicians worldwide in assessing and treating FD. In addition, expertise has been developed in assessment of other sensory and autonomic disorders which has led to numerous referrals of other pediatric disorders with autonomic dysfunction and other congenital sensory neuropathies.  The Treatment Center website includes additional information about Familial Dysautonomia. 
   

• Carolyn Desch, CSW, Director of Psychological Services
   

• National Dysautonomia Research Foundation (NDRF)
  Disorders of the autonomic nervous system can have a tremendous impact on the lives of those that are affected. NDRF was established to provide a support network and information network for affected individuals. They also act as a network to generate funding towards the continued research efforts to find better management of these conditions.
    

• American Autonomic Society
  The American Autonomic Society has been established to bring together individuals from diverse disciplines who share an interest in the structure and function of the autonomic nervous system and in the pathology, treatment, and prevention of its disorders. The Society sponsors annual meetings and provides a point of contact among the many interested clinical and basic scientists who wish to communicate across disciplinary lines.
    

• The National Organization for Rare Disorders (NORD)
  The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research and service. 
   

• National Institute of Neurological Disorder and Stroke (NINDS)
  NINDS is the nation's leading supporter of biomedical research on disorders of the brain and nervous system.  The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.
   

• Genetic Alliance
  The Genetic Alliance is an international coalition comprised of millions of individuals with genetic conditions and more than 600 advocacy, research and health care organizations that represent their interests. As a broad-based coalition of key stakeholders, the Alliance builds partnerships to promote healthy lives for all those living with genetic conditions. The Alliance identifies solutions to emerging problems and endeavors to reduce obstacles to rapid and effective translation of research into accessible technologies and services.
   

• Respiratory Care
  Cystic Fibrosis Foundation
  University of Missouri Respiratory Therapy Center
  Cincinnati Children's Hospital
  West Virginia Hospital of Osteopathic Medicine
  National Jewish Medical & Research Center
   

• Adaptive Equipment 
  The Vest Airway System
  Breathing Easy
  General Physiotherapy
  Trianim Health Services
   

• Gastrostomy Equipment  
  Bard
  Mic-Key
  Children's Hospital - Cincinnati  
     

• Gastrostomy  
  Feeding and Swallowing Links  
  Children's Hospital – Cincinnati
   

• Resource Manual
  You can request the Dysautonomia Foundation's 2004 FD Resource Manual by calling 212-949-6644 or sending an email.
  
  Although it is out of date and focuses primarily on the New York City area, the Foundation's previous Resource Guide is still a useful source of information on:
   

• Health and Medical services

• Benefits

• Education

• Day Care

• Counseling and Family Support

• Social Life

• Job training and Employment Opportunities

• Housing Options and Independent Living

• Equipment and Technology

• Transportation

• Future and Financial Planning

• Other Sources of Help

Federal Resources

• Social Security Disability
  The two largest Federal programs that provide assistance to people with disabilities are: 1) Social Security, and 2) Supplemental Security Income (SSI).  Both are administered by the Social Security Administration.   You can apply for disability benefits online, by calling 1-800-772-1213, or by visiting your local Social Security office.  The Social Security Disability website includes information on locating your local office. A non-governmental, but related website, Social Security Disability Secrets: information, answers, tips, advice and help, provides additional useful information about navigating the often confusing bureaucracy associated with social security benefits.  
   

• National Institutes of Health (NIH)
  The National Institutes of Health is the steward of medical and behavioral research for the Nation. It is an Agency under the U.S. Department of Health and Human Services.  NIH headquarters are located in Bethesda, Maryland, and the surrounding area. NIH funds scientific studies at universities and research institutions across the Nation. NIH also sponsors public events around the Nation. The NIH comprises the Office of the Director and 27 Institutes and Centers. The Office of the Director is responsible for setting policy for NIH and for planning, managing, and coordinating the programs and activities of all NIH components.
   

• Centers for Medicare & Medicaid Services  
  The Centers for Medicare & Medicaid Services website provides a variety of resources related to information on Medicare and Medicaid. Included is information on state waiver programs.
   

• U.S. Department of Health and Human Services
  The U.S. Department of Health and Human Services is the United States government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.  The department includes more than 300 programs covering a wide spectrum of activities.  The Department of Health provides links to a variety of resources, such as MEDLINEplus -- Disabilities (General).
   

• The Administration on Developmental Disabilities
  The US Department of Health and Human Services Administration for Children and Families provides the Administration on Developmental Disabilities web site. The Administration on Developmental Disabilities ensures that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent services, supports, and other assistance and opportunities that promote independence, productivity, and integration and inclusion into the community.
   

• Disability, Aging and Long-Term Care (DALTCP)
  The Office of Disability, Aging and Long-Term Care (DALTCP) is charged with developing, analyzing, evaluating and coordinating HHS policies and programs which support the independence, productivity, health and long-term care needs of children, working age adults and older persons with disabilities. DALTCP is in the Office of the Assistant Secretary for Planning and Evaluation within the U.S. Department of Health and Human Services.
   

• Americans with Disabilities Act
  The ADA website offers information and technical assistance on the Americans with Disabilities Act. The website includes federal, state, and local government resources, as well as links for technical assistance and an information line. The ADA ensures equal opportunity for persons with disabilities in employment, state and local government services, public accommodations, commercial facilities, transportation, and requires the establishment of TDD/telephone relay services.
   

• DisabilityInfo.gov 
  DisabilityInfo.gov is the New Freedom Initiative's Online Resource for Americans with Disabilities. It is the comprehensive federal website of disability-related government resources, and includes information on employment, education, housing, transportation, health, income support, technology, community life, and civil rights. DisabilityInfo.gov is the result of an Executive Memorandum issued by President George W. Bush on August 28, 2002 as part of his New Freedom Initiative, which directed federal agencies to work together to build a one-stop interagency Web portal for people with disabilities, their families, employers, service providers, and community members.
   

• U.S. Equal Employment Opportunity Commission (EEOC)
  The Equal Employment Opportunity Commission website provides information on equal employment for people with disabilities; press releases; information on laws, regulations, policy guidance and litigation; and resources for outreach and training.
   

Disability Advocacy Resources

• The Association of University Centers on Disabilities (AUCD)
  Formerly the American Association of University Affiliated Programs for Persons with Developmental Disabilities, the Association of University Centers on Disabilities (AUCD) is a 501(c) non-profit organization that promotes and supports the national network of university centers on disabilities, which includes University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD), Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs and Developmental Disabilities Research Centers (DDRC).
   

• Wrightslaw
  Parents, advocates, educators, and attorneys come to Wrightslaw for accurate, up-to-date information about special education law and advocacy for children with disabilities. Pete Wright is an attorney who represents children with special needs. Pete struggled with learning disabilities, including dyslexia, dysgraphia and ADHD. His determination to help children grew out of his own educational experiences.
    

• FetaWeb.com
  FetaWeb.com will teach you effective advocacy skills. You will learn to recognize pitfalls and avoid mistakes that prevent parents from successfully advocating for their children.
    

• United Cerebral Palsy
  UCP is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, UCP's mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities. United Cerebral Palsy has useful resources including: Education rights/advocacy as well as Public Policy for health insurance.
    

• DisabilityResources.org
  Disability Resources, Inc. is a nonprofit 501(c)(3) organization established to promote and improve awareness, availability and accessibility of information that can help people with disabilities live, learn, love, work and play independently. DisabilityResources.org provides the DRM Guide to Disability Resources on the Internet. They disseminate information about disability resources to libraries, disability organizations, health and social service professionals, consumers and family members, through: Publications, such as their award-winning newsletter Disability Resources Monthly (check it out for a FREE copy); online resources, including  The DRM WebWatcher, their easy-to-use online subject guide to the best disability resources on the internet; and The DRM Regional Resource Directory, their guide to state and local agencies and organizations.
    

• National Dissemination Center for Children with Disabilities
  The National Dissemination Center for Children with Disabilities provides information to the nation on disabilities in children and youth; programs and services for infants, children, and youth with disabilities; IDEA, the nation's special education law; No Child Left Behind, the nation's general education law; and, research-based information on effective practices for children with disabilities. They also have information about specific disabilities; early intervention services for infants and toddlers; special education and related services for children in school; resources and connections in every state; individualized education programs; parent materials; disability organizations; professional associations; education rights and what the law requires; and, transition to adult life.
   

• The ARC  
  The ARC is the national organization of and for people with developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with mental retardation and their families. The association also fosters research and education regarding the prevention of mental retardation in infants and young children.
   

• Exceptional Parent Magazine
  Exceptional Parent continues 32 award-winning years of providing information, support, ideas, encouragement and outreach for parents and families of children with disabilities, and the professionals who work with them. There is a fee for this online resource. A one-year subscription (12 issues) is $34.95.
   

• National Arts and Disability Center (NADC)
  The National Arts and Disability Center (NADC) is the national information dissemination, technical assistance and referral center specializing in the field of arts and disability. The NADC is dedicated to promoting the full inclusion of children and adults with disabilities into the visual, performing, media, and literary arts communities. Its resource directories, annotated bibliographies, related links and conferences serve to advance artists with disabilities and accessibility to the arts. The NADC is a project of the University of California, at Los Angeles (UCLA), Tarjan Center for Developmental Disabilities (formerly University Affiliated Program). The NADC posted a new link to State Agencies and Organizations for ADA Compliance and Technical Assistance. The state resource directories contain organizations and agencies that provide technical assistance regarding the ADA and the Arts. State listings include disability agencies and organizations for creating an access and advisory committee or conducting outreach to the disability community.
   

• Information on Individuals With Disabilities Education Act (IDEA)
  The 1997 Individuals With Disabilities Education Act aims to strengthen academic expectations and accountability for the nation's 5.4 million children with disabilities, and to bridge the gap that has too often existed between the regular curriculum and the curriculum for children with disabilities. IDEA is currently undergoing a reauthorization process. Click here for an additional perspective on the reauthorization process.
   

• Project Sunshine
  Project Sunshine is a non-denominational, not-for-profit organization, which provides numerous free programs and services to children with cancer, AIDS, and other life-threatening illnesses. They also have programs that help families cope with the illness of a child. They are a 100% volunteer organization, as all that are involved are donating their help out of the goodness of their hearts. From lawyers to graphic artists to college students, all of their volunteers are devoted to improving the lives of the children and families they serve.
    

• Harbor House Law Press 
  As a mission oriented publisher, Harbor House Law Press publishes information about special education law and advocacy. Their publications are designed to meet the needs of parents of children with disabilities, regular and special educators, special education service providers, health care professionals, child advocates, and attorneys who represent children with disabilities. The Harbor House Law Press website contains a link to The Beacon: Journal of Special Education Law & Practice. The Beacon is a multi-disciplinary electronic journal of special education law and practice that publishes articles and essays for attorneys and advocates who represent children with disabilities and others who are interested in special education legal topics. Each issue of The Beacon focuses on a theme and includes practical and theoretical articles.
   

• Sibling Support Project 
  The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. The Project's primary goal is to increase the availability of peer support and education opportunities for brothers and sisters of people with special health and developmental needs. To accomplish this goal, project staff: provide training and technical assistance to those starting a local Sibshop; conduct workshops for parents and providers on issues facing brothers and sisters (as well as fathers and grandparents); maintain a database of over 350 existing Sibshops and other sibling programs across the United States, Canada and beyond; sponsor no-cost listservs for young brothers and sisters (SibKids) and adult brothers and sisters (Sibnet) and for those who run Sibshops or similar sibling programs (Sibgroup); create awareness materials (e.g., curricula, children's books, websites, newsletters) for parents, service providers and brothers and sisters. 
   

• The Job Accommodation Network 
  The Job Accommodation Network (JAN) is a service of the Office of Disability Employment Policy (ODEP) of the U.S. Department of Labor. JAN is one of several ODEP projects. JAN's mission is to facilitate the employment and retention of workers with disabilities by providing employers, employment providers, people with disabilities, their family members, and other interested parties with information on job accommodations, self-employment and small business opportunities and related subjects. JAN's efforts are in support of the employment, including self-employment and small business ownership, of people with disabilities. JAN represents the most comprehensive resource for job accommodations available. JAN's work has greatly enhanced the job opportunities of people with disabilities by providing information on job accommodations since 1984. In 1991 JAN expanded to provide information on the Americans with Disabilities Act. JAN consultants have obtained at least one Master's degree in their specialized fields, ranging from rehabilitation counseling to education and engineering. The development of the JAN system has been achieved through the collaborative efforts of the U.S. DOL Office of Disability Employment Policy, the International Center for Disability Information at West Virginia University, and private industry throughout North America.
   

• International Center for Disability Resources
  Founded in 1998, The International Center for Disability Resources on the Internet (ICDRI) is a non-profit center based in the United States and designated as a 501 (c)(3) entity. Their overarching vision is the equalization of opportunities for persons with disabilities. As an internationally recognized public policy center organized by and for people with disabilities, ICDRI seeks to increase opportunities for people with disabilities by identifying barriers to participation in society and promoting best practices and universal design for the global community. ICDRI’s mission includes the collection of a knowledge base of quality disability resources and best practices and to provide education, outreach and training based on these core resources. ICDRI makes this information available in an accessible format through their web site.
   

• The Center for Patient Advocacy
  The Center for Patient Advocacy is a private, nonprofit grassroots organization founded to represent the interests of patients nationwide and dedicated to ensuring that all Americans have timely access to the highest quality medical care in the world.
  
  In furtherance of these goals, the Center is committed to the following:

  • Educating patients on the delivery of health care, the restrictions government and the private sector impose on patient care, and the role that they can play to affect change;

  • Ensuring that health care decisions in this country are made by patients and their doctors and are based on the medical needs of patients, not financial considerations;

  • Informing patients of federal, state and private sector health care reform initiatives;

  • Protecting patients' rights against needless government and private sector interference;

  • Promoting patient access to reliable information about state-of-the-art medical technologies and treatments;

  • Articulating patient concerns to Members of Congress, the executive branch, and state officials;

  • Developing and supporting initiatives to eliminate arbitrary restrictions and bureaucratic delays imposed by the government and private sector on the practice of medicine and the delivery of quality care;

  • Promoting fairness and equality in America's health care system.
     

• Special Needs Advocate for Parents (SNAP)
  Special Needs Advocate for Parents was founded by the parent of a child with a disability, who was concerned about how to prepare for her daughter's future needs.  SNAP offers information and education through a comprehensive web site and a quarterly newsletter; a national speakers bureau; advocacy and resolution of medical insurance problems; referrals to educational advocates, support groups, and related organizations and professionals; a directory of attorneys; special needs estate planning via seminars and private consultations with their network of certified special needs advisors.

Resources Specifically for the Jewish Community

• National Jewish Council for the Disabled
  The National Jewish Council for the Disabled is dedicated to addressing the needs of all individuals with disabilities within the Jewish community. NJCD strives to enhance the life opportunities of people with special needs and to insure their participation in the full spectrum of Jewish life. The NJCD is composed of 4 major divisions which include: National Resource Center, National Center for Inclusion, Yachad, and Our Way.
   

• Chai Lifeline
  Chai Lifeline's extensive network of free programs and services is designed to help every member of the family coping with the serious illness of a child.  The organization offers diverse programs such as Camp Simcha, telephone support groups, a volunteer program, and the annual Disney World Trip.
   

• Jewish Genetic Diseases: A Mazornet Guide
  The Mazornet Guide is an online directory of resources regarding Jewish genetic diseases.  The site includes links to information on genetic testing, Familial Dysautonomia, and other Jewish genetic diseases.  There is also basic scientific information on genetics.  
   

• Chicago Center for Jewish Genetic Disorders
  Over the last 30 years, screening tests for carriers have been developed for many of the identified Jewish genetic disorders. Unfortunately, community-based education efforts have not paralleled scientific advances. The Chicago Center for Jewish Genetic Disorders is a critical effort to provide public and professional education and to empower community members to seek out information and prevention strategies. With its current set of sponsors, the Center represents the blending of science with religious, cultural and historical sensitivity and awareness. The Center seeks to become the voice that translates laboratory discoveries into accessible information for the Jewish community at risk as well as for physicians and other health care providers.
  

• Access-Able Travel Source
  Access-Able Travel Source has been providing online access information for mature and disabled travelers since 1995. They have information about travel with disabilities, mature travel, disability magazines, access guides, wheelchair travel, scooter rental, accessible transportation, and more. Access-Able Travel Source has been providing online access information for mature and disabled travelers since 1995. They have information about travel with disabilities, mature travel, disability magazines, access guides, wheelchair travel, scooter rental, accessible transportation, and more.
   

• Medical Travel, Inc.
  Medical Travel, Inc. is a disability travel resource. Their mission is to help disabled and older people lead independent lives by enhancing their ability to travel. Their website includes links to information about oxygen rentals and vacations, as well as links to other travel resources.