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Educational Documents and Websites

The Sturge-Weber Foundation has a wealth of great resources, and tools to help you have improved quality of lfe throughout your journey with Sturge-Weber syndrome and related birthmark conditions. Our resource materials will educate you on various topics, answer any questions you may have and inform you about the latest news.

 

  • Kaelin Ball Fund

    Provides monetary assistance to SWF members who need small financial assistance for non-medical treatments not covered by insurance, but necessary to obtain proper care and treatment.

  • Locate your local Social Security office for more details.

  • Excellent documentation on the major neurological features of patients with Sturge-Weber syndrome including seizures, headache, focal neurologic deficits and cognitive and psychological impairment.

  • Includes tips and suggestions from the school nurse's perspective, sample letter to be sent to the teacher and staff, sample letter to be sent to the parents of classmates or published in the school newsletter, self esteem and students, seizure observation form, a guide for schools, epilepsy in the classroom - a teacher's role, and function in the academic setting.

  • Includes sample letter for daycare provider, seizure observation form, and types of seizures.

  • Basic information that school nurse will find valuable.

  • Power Point Presentation for Kids about Laser Treatments

    Please contact Julia Terrell, jterrell@sturge-weber.org, 973-895-4445, for a copy of this presentation.

  • This document should be completed by an individual (and/or their caregiver), to describe important aspects about their special health care needs. It was designed to be shared with many types of healthcare providers, in clinic and hospital settings. It is especially useful for providing pertinent information to those who are not very familiar in providing care to individuals with intellectual/developmental disabilities. The forms are available for download. They can be printed as is, or the information can be typed in before printing.

  • A necessity for the treatment of Port Wine Birthmarks.

  • Global Genes RARE Tootkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients. RARE Toolkits are being created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices.

  • SWS Textbook - 2nd Edition

    The latest information and insight into Sturge-Weber syndrome. Whether it's for a reason, a season, or a lifetime, this textbook needs to be on your library shelf! The second edition describes newer imaging modalities and updates information about the clinical findings of Sturge-Weber syndrome and available patient resources.

  • SWS Guidebook for Teens

    A booklet geared toward the issues of children ages 13-17. In addition to addressing the medical issues faced by this group, it also focuses on the social and emotional issues such as friendship, bullying, self-esteem, dating and family issues.

  • Someone Special

    A 20 page booklet written for children with a birthmark, ages 2-7 and their parents. While viewing pictures of others with birthmarks, readers are encouraged to celebrate their talents.

  • A Kids Guide to SWS

    Abundantly illustrated, gives elementary and middle school children solid facts about SWS. Also includes chapters on self-esteem, relationships and bullying. Also useful for teachers, classmates and family members.

  • Color Me Different Coloring Book

    A coloring book that gives elementary level children a fun activity along with an important message about accepting other children who look different. Also discusses the manifestations of SWS in easy, kid-friendly language.

  • A comprehensive site for parents and teachers of children with special needs.

  • A complete guide to distance learning for students with disabilities. Learn how to work with disability services, employ assistive technology, evaluate online programs and succeed in the virtual classroom.

  • Online learning tips: Online College & E-Learning Strategies

  • Prospective students with disabilities will find that many campuses are quipped with offices and services that address accessibility, accommodation, and assistive technology.

  • See the benefits of online education for disabled students. While traditional brick-and-mortar colleges and universities may help accommodate students with disabilities, accredited online colleges offer the flexibility and accommodations that may help students get acclimated easier to the challenges of college life.

  • Countless resources available to make the transition to higher education less stressful.

  • The National information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Their special focus is children and youth (birth to age 22). Now known as the Center for Parent Information and Resources.

  • Learn about the variety of independent school choices available to families, using this searchable database.

  • Information on learning disabilities for parents, teachers, and other professionals.

  • This site is dedicated to uniting people interested in rights and issues affecting people with disabilities, with particular emphasis on college students and access to higher education and employment issues. The website was created while a college student with a grant to create a website to serve college students with disabilities.

  • Information for people seeking to file for Social Security Disability and or SSI Disability.

  • Aims to provide disabled individuals with all the knowledge and tips needed to successfully file a disability claim and receive the financial support they deserve.

  • More helpful information on Social Security Disability

  • The Simple Dollar has explanations of the process and lists of disabling conditions and includes a calculator of benefits.

  • For those who are having difficulty applying for SSDI, some suggestions from a private consultant.

  • Foundation's Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.

  • The NINDS, an agency of the US Federal Government and a component of the National Institutes of Health and the US Public Health Services, is a lead agency for the Congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system.

  • Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, and advocacy for children with disabilities.

  • Disability disclosure guidelines booklet

  • Help and information for youth with disabilities on employment, legal rights and education.

  • Website that includes all emergency contact information, legal and government information for each state in one place.

  • The largest voluntary organization in the United States devoted solely to the welfare of disabled persons and their families.

  • A Voluntary organization dedicated to providing information, support and assistance to parents of children with disabilities, and professionals.

  • A Magazine for parents of children with special needs.

  • A comprehensive evaluation of off-the-shelf toys for children with special needs.

  • (ADA) envisions a day when Adaptive Design Centers (ADC) are operating in schools, agencies, and universities everywhere; and when all people with disabilities are fully educated, employed, and valued, in every family, community, and country. A workshop that designs and helps provide adaptive equipment for children with disabilities.

  • Devoted to issues regarding the provision of respite to caregivers.

  • A Network of pediatric specialty hospitals, founded by the Shrine, where children under the age of 18 receive excellent medical care absolutely free of charge.

  • Search for medical articles - known as PubMed.

  • This is a guide for job-seekers and workers with a disability. The guide explains the rights afforded to them by federal and state governments. In addition, we offer useful tips for finding a job, advice on staying gainfully employed, and gidance that can help them talk with an existing employer about making a reasonable accommodation.

  • Provides information about patient assistance programs which provide no cost prescription medications to eligible participants.

  • Designed for people over age 55, this online tool can be used to connect to government programs that can help pay for prescription drugs, health care, utilities, and other needs. The site contains information on more than 1300 programs from all fifty states.

  • A single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies.

  • Search for information and applications forms for company and state programs by company name, drug name or state.

  • An independent, charitable organization that assists eligible individuals in obtaining prescription medications.

  • How to challenge insurance denials.

  • Solving answers and healthcare access problems since 1996

  • Simply described, the goal of NIH research is to aqcuire new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.

  • A clearing house for information and contacts on rare conditions.

  • Check interactions between drugs.

  • Download software to catalog information that will save doctors valuable time.

  • A service for patients to provide comments on their physicians and rate the care they have received.

  • Helps secure and provide medical treatment for needy children.

  • Provides free access to health care for families who cannot afford transportation to treatment centers anywhere in America.

  • Is funded in part by Ronald McDonald House of Charities. An organization of experienced pilots provide free transportation to needy adults and children.

  • A Nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service.

  • Gives links to other air transportation sources.

  • Healthcare company providing worldwide bed to bed service.

  • Network of local hospitality resources for parents and adults planning hospitalization. Listings are for every state in the US.

  • Vendor of safety harnesses for young children.