Links

People living with Spina Bifida often have many obstacles to deal with. Hydrocephalus and latex allergies are common among many. Folic acid intake has been shown to help reduce the incidence rate of Spina Bifida For more information on these subjects try out these links.


Direct Aid Reimbursement


SB Parents ListServ This is a contact service for parents of children with Spina Bifida to exchange ideas, resources, debate and have some great discussions.


The national Spina Bifida Association


Disaster Preparedness Links

  1. Preparation Checklist
  2. Ready FEMA Government
  3. Emergency Preparedness Guidebook


Hydrocephalus:

   * Hydrocephalus Association

   * Hydrocephalus Foundation, Inc.

Latex Allergy:

   * American Latex Allergy Association

   * Latex Allergy Links


Online Excercise Class


Clinics


Children's Hospital and Regional Medical Center

Neurodevelopmental & Birth Defects Clinics

4800 Sandpoint Way NE

Seattle, WA 98105

Phone: 206-987-2184

Web site: www.seattlechildrens.org


Sacred Heart Children's Hospital

Spina Bifida Center

101 West 8th Ave.

Suite 4100

Spokane, WA 99204

Phone: (509) 474-3748

Web site: http://www.shmcchildren.org



Resources















Children’s Hospital of Philadelphia’s web site at CHOP.edu


Spina Bifida Treatment

http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/spina-bifida.html

- Addresses both prenatal and postnatal repair considerations

- Outlines the findings of the MOMS (Management of Myelomeningocele) Study, which looks at treatment in utero

Eligibility Guidelines for Fetal Surgery for Myelomeningocele

http://www.chop.edu/service/fetal-diagnosis-and-treatment/professional-resources/fetal-spina-bifida-surgery-referral-guidelines.html

Fetal Surgery for Spina Bifida Video Series

http://www.chop.edu/video/fetal-surgery/spina-bifida-video.html

- Explores Spina Bifida diagnosis, treatment options, delivery and follow-up care


The Future of Hydrocephalus Treatment

Gravitational and Self Adjusting Shunt Valves Revolution


The Spina Bifida Genetics Research Project: Phase II


Youth Outdoors Unlimited

http://www.youthoutdoorsu.org/  
















ASK Line (Answers for Special Kids)

Phone: 1-800-322-2588


Center for Children with Special Needs at Children's Hospital

http://www.cshcn.org


Centers for Disease Control and Prevention

http://www.cdc.gov


The ARC of Washington State

http://www.arcwa.org


Parent to Parent South Puget Sound Chapter

http://http://www.ssp2p.org/index.html


Prime Time (a Camp for Special Families)

http://www.campprimetime.org


Healthy Mothers, Healthy Babies

http://www.hmhb.org


Adolescent Health Transition Project

http://depts.washington.edu/healthtr/


Washington State Fathers Network

http://www.fathersnetwork.org


National Information Center for Children and Youth with Disabilities (NICHCY)

http://www.nichcy.org


Family Village

http://www.familyvillage.wisc.edu


Exceptional Parent Magazine

http://www.eparent.com


Parent Help 123

http://www.parenthelp123.org/


Lifestyle Accelerator

http://www.lifestyleaccelerator.com

URL: http://www.rockandrollcycles.com/

Rock and Roll Cycles

http://www.rockandrollcycles.com/


Website for College Students with Disabilities

http://weconnectnow.wordpress.com/


American Latex Allergy Association

www.latexallergyresources.org



















Links/Resources
Home. About Us. Contact Us. Spina Bifida. Administration. Folic Acid.

formerly, The Evergreen Spina Bifida Association

“A new product that will make the activities of daily living much easier and safer for wheelchair users.”


Camp Korey is a non-profit organization , which provides camping programs to children living with chronic or life-threatening medical conditions free of charge. We are located in Carnation, Washington and our campers are children between the ages of 7-17, who are living with illnesses such as skeletal dysplasia, metabolic disorders, cranio-facial differences, organ transplants, and other blood-borne illnesses. Our camping programs offer these children an opportunity to participate in activities like arts and crafts, swimming, horseback riding, team building, and more with the goal of allowing them to simply let loose, have fun, and BE KIDS.


Folic Acid Council of Ontario  http://www.folicacid.ca
A Canadian based website dedicated to increase awareness about the benefits of folic acid and folate for pregnant mothers around the world


Spina Bifida & Hydrocephalus Association of Ontario
http://www.sbhao.on.ca  Provides a range of services and support for parents, families, youth and adults with Spina Bifida & Hydrocephalus.


Page 76

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From Vehicle Modifications to Car Insurance: Helping Everyone from Students to Seniors Navigate Driving With a Disability