patientresources opt258The Sturge-Weber Foundation has a wealth of great resources, and tools to help you have improved quality of life 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 to inform you about the latest news.

 

Additional resources can also be found under Medical Matters, at the bottom of each condition listed.  Do you have a resource that you feel would be a good addition to the site?  Please send it to This email address is being protected from spambots. You need JavaScript enabled to view it..

 

Be sure to check out the entire website, use the search engine and remember we are only a phone call or email away! 

 

Phone: 973-895-4445

 

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Office Hours: 8:30am-3:e0pm EST Monday - Friday

  

Treatment Assistance 

  • Find a medical professional: If you are already registered with the SWF, please email Anne at This email address is being protected from spambots. You need JavaScript enabled to view it..  If you are not registered, please complete the contact form.  We will be in touch short after receiving your information.
  • SWS Centers of Excellence:  These Centers provide the comprehensive care necessary for treating adults and children who have a Port Wine birthmark, Sturge-Weber syndrome or Klippel-Trenaunay.
  • Insurance Appeal Information: The necessity for treatment for Port Wine birthmarks
  • Kaelin Ball Fund: provides monetary assistance to SWF members who need just that small amount that is not a medical expense and therefore not covered by insurance but is necessary to obtain proper care and treatment
  • Apply for Disability: Locate your local Social Security office for more details
  • Laser Treatment Diary: Laser treatment will significantly lighten the birthmark, but never completly eradicate it. 

 

Toolbox

  • Emergency Room Guide for SWS The major neurological features of patients with Sturge-Weber syndrome include seizures, headache, focal neurologic deficits and cognitive and psychological impairment.
  • Info Kit for Elementary Schools:  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 functioning in the academic setting.
  • Info Kit for Daycare:  Includes sample letter for daycare provider, seizure observation form, and types of seizures.
  • School Nurse Brochure: Basic information that school nurse will find valuable
  • Power Point for Kids Explaining Laser Treatment for Kids:  email This email address is being protected from spambots. You need JavaScript enabled to view it. for a copy
  • FCIC's My Health Passport  is a document that should be completed by an individual (and/or their caregiver), to describe important aspects about their special health care needs. My Health Passport 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. English version| Spanish version. We would welcome any feedback or comments regarding your experiences with using FCIC's My Health Passport!Medical Record Keeping Forms Because the treatment of Sturge-Weber syndrome (SWS) may involve a variety of health care professionals, it is very useful to have a working system to track ongoing medical care and treatment.
  • The Sturge-Weber Foundation position paper on the necessity for the treatment of Port Wine Birthmarks.
  • Rare Tool Kits:  Global Genes RARE Toolkits 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.

 

Printed Materials Available on the Marketplace

  • Emergency Room Guide for SWS: The major neurological features of patients with Sturge-Weber syndrome include seizures, headache, focal neurologic deficits and cognitive and psychological impairment.
  • 2nd Edition SWS Textbook:  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!  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 four color soft cover booklet geared toward the issues of children ages 13-17.  In addition to addressing the medical issues faced by this group, such as seizures, glaucoma, laser treatments and medication, it will also focus on the social and emotional issues such as friendship, bullying, self-esteem, dating and family issues.
  • Someone Special: This 20 page booklet was written for children with a birthmark, ages 2 to 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 Color Me the Same: Coloring book gives school age 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.
  • Check it out Cards:  Check it Out Cards are handy resource to answer those spontaneous questions you encounter in public situations. It also directs the recipient to the SWF website for more information. Cards are sold in packs of 25. 

     

 

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 DISABILITY RESOURCES

 

 Education

  • Special Education Guide: A comprehensive site for parents and teachers of children with special needs. 
  • Online Learning for Students with Disabilities: A complete guide to distance learning for students with disabilities.  Learn how to work with disability services, employ assistive tecnology, evaluate online programs, and succeed in the virtual classroom.  

  • AC Online: Online learning tips: Online College & E-Learning Strategies
  • College Resources for Students with Disabilities:  Prospective students with disabilities will find that many campuses are equipped with offices and services that address accessibility, accommodation, and assistive technology.
  • Accredited Online Colleges and Disability Education: See the benefits of online education for disabled students. While traditional brick-and-mortar colleges and universities may help accomodate students with disabilities, accredited online colleges offer the flexibility and accommodations that may help students get acclimated easier to the challenges of college life. 
  • College Resources for Students with Disabilites Guidebook: Countelss resources available to make th transition to higher education less stressful.
  • The National Information Center for Children and Youth with Disabilities (NICHCY) 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 Library www.parentcenterhub.org
  • National Association of Independent Schools- learn about the variety of independent school choices available to families, using this searchable database.
  • Schwab Foundation for Learning - A parent’s guide to helping kids with learning disabilities
  • LD Online- information on learning disabilities for parents, teachers, and other professionals
  • We Connect Now 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

Legal and Governmental

  • Social Security Disability & SSI Claims - information for people seeking to file for Social Security Disability and or SSI Disability.
  • Social Security Disability Help: Aims to provide disabled individuals with all the knowledge and tips needed to successfully file a disability claim and recieve the financial support they deserve. 
  • Social Security & Disability Resource Center - more helpful information
  • The Simple Dollar - The Simple Dollar has explanations of the process and lists of disabling conditions and includes a calculator of benefits
  • Disability Secrets - For those who are having difficulty applying for SSDI, some suggestions from a private consultant.
  • Patient Advocate 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.
  • National Institute of Neurological Disorders and Stroke- The NINDS, an agency of the U.S. Federal Government and a component of the National Institutes of Health and the U.S. Public Health Service, 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.
  • Wrightslaw: Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
  • National Collaborative on Workforce and Disability: Disability disclosure guidelines booklet 
  • National Youth Transition Center: Help and information for youth with disabilities on employment, legal rights and education
  • courtsystem.org: Website that includes all Emergency contact information, legal and government information for each state in one place.

General

  • The Arc of the United States (formerly Assoc. for Retarded Citizens of the United States) - The largest voluntary organization in the United States devoted solely to the welfare of disabled persons and their families.
  • Federation for Children with Special Needs- a voluntary organization dedicated to providing information, support, and assistance to parents of children with disabilities, and professionals.
  • Learning Disabilities Association of America- devoted to the well-being and education of children and adults with learning disabilities and will respond to requests for information on any related topic 
  • Exceptional Parent Magazine.- a magazine for parents of children with special needs. 
  • Ableplay- A comprehensive evaluation of off-the-shelf toys for children with special needs.
  • Adaptive Design Associates, (ADA) envisions a day when Adaptive Design Centers* (ADC’s) 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. 

 Patient Assistance Programs

 

Patient Assistance: Flights and Hotels

  • Miracle Flight for Kids- provides free access to health care for families who cannot afford transportation to treatment centers anywhere in America.
  • Airlifeline is funded in part by Ronald McDonald's House of Charities. An organization of experienced pilots provide free transportation to needy adults and children.
  • Air Care Alliance - a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service.
  • Angelflightatnih.org provides air transportation for patients in financial need
  • Mercymedical.org gives links to other air transportation sources
  • AMR Air Ambulance – healthcare company providing worldwide bed to bed services

  • Angel Flight Europe - arranges free long distance transportation in non-emergency medical situations. Serves the European Union and Switzerland 
  • Natl. Assn of Hospital Hospitality Houses - network of local hospitality resources for parents and adults planning hospitalization. Listing are for every state in the US
  • Internet Hospital Directory- full listing of hospitals world-wide
  • Kids Fly Safe - Vendor of safety harnesses for young children

 

This material is provided for your general information only. The Sturge-Weber Foundation does not give medical advice or engage in the practice of medicine. The SWF under no circumstances recommends treatment for specific individuals and in all cases recommend that you consult your physician or local treatment center before pursuing any course of treatment.