Associations
There are many unknowns surrounding the diagnosis and treatment of adult-onset normal pressure hydrocephalus. Although the success rate for shunting can be as high as 80 percent when the cause of hydrocephalus is known, the chance for a complete reversal of symptoms or marked improvement is less predictable. However, NPH is not a hopeless condition. Advanced technology is continually introduced and developed. Adults diagnosed with normal pressure hydrocephalus, and their families, should be encouraged to ask questions, gather information and network with others.
Patient Associations
Hydrocephalus Association
Dory Kranz, Executive Director
Pip Marks, OutReach Director
870 Market Street, Suite 705
San Francisco, CA 94102
Phone: (415) 732-7040
Toll-free: (888) 598-3789
Fax: (415) 732-7044
Email:
info@hydroassoc.org
Web:
www.hydroassoc.org
The Hydrocephalus Association is a member-supported nonprofit organization founded in 1983 to provide support, education and advocacy to individuals, families and professionals. Their goal is to provide comprehensive services to educate and empower individuals and families to seek out the best medical care, programs and resources to meet their needs now and in the future.
To receive a free information packet, which includes a Resource Guide on NPH, sample copies of their quarterly newsletter and a copy of
About Normal Pressure Hydrocephalus - A Book for Adults and Their Families, please contact the Hydrocephalus Association office.
National Hydrocephalus Foundation
Debbi Fields, Executive Director
12413 Centralia Rd.
Lakewood, CA 90715-1653
Phone: 562-924-6666
Phone: 888-857-3434
Fax: 562-924-6666
Email:
hydrobrat@earthlink.net
Web:
www.nhfonline.org
The objectives of NHF are:
- To assemble and disseminate information pertaining to hydrocephalus, its treatments and outcomes
- To establish and facilitate a communication network among affected families and individuals
- To help others gain a deeper understanding of those areas affected by hydrocephalus, such as education, insurance, tax and estate planning, employment and family
- To increase public awareness and knowledge of hydrocephalus
- To promote and support research on the causes, treatment and prevention of hydrocephalus
In addition to providing the public with informational brochures, NHF offers a variety of help guides, maintains a reference library, videos/CD's on hydrocephalus, has support groups, will assist others in starting an NHF support group in their area, and publishes a quarterly newsletter, Life~Line.
Madi's Fund for Hydrocephalus & Associated Neurosurgical Research
Debra Jaurigue - Founder & Director
3 Emeritus Street
Rutland, Vermont 05701
802-773-6186
Email:
madifund@aol.com
Web:
www.madisfund.org
Madi's Fund is a non-profit fund established through the University of Vermont College of Medicine in Burlington, VT. It was started in April 1998, in honor of Madison Jaurigue, who was diagnosed "in-utero" with hydrocephalus. The ultimate vision of Madi's Fund is to help create a healthier and better community through research, education, and public knowledge of hydrocephalus and associated pediatric neurosurgical conditions.
S*T*A*R*S (Seeking Technigues Advancing Research in Shunts)
Vida Hamilton - Co-Chair
165 S. Opdyke #105
Auburn Hills, MI 48326
248-644-STAR
Email:
info@starskids.org
Web:
www.stars-kids.org
STARS-kids (Seeking Techniques Advancing Research in Shunts) is an organization working to eliminate complications associated with hydro-cephalus and shunts. STARS-kids is committed to raising awareness and funds for shunt research and strives to ensure a brighter future for shunted children. Private donations are crucial since federal funds are not currently directed into this biotechnological field.
STARS-kids consists of parents and shunted individuals, and meets monthly on the third Thursday in Southfield, Michigan. Find out more about STARS-kids, shunts, hydrocephalus, current research projects, and upcoming special events by visiting their website. You may contact STARS-kids by visiting their website.
Northeast Ohio Hydrocephalus Support Group (nohsg)
Hillary Rossen
Cleveland, OH
440-684-9454
Email:
hkr0927@aol.com
Web:
www.nohsg.org
The Northeast Ohio Hydrocephalus Support Group (NOHSG) was incorporated in April 2003. The group meets one evening a month to provide support and education to patients and families. Past speakers have included neurologists, neurosurgeons, nurses, child life, industry repre-sentatives, pediatricians and, other healthcare providers. They also hold an annual 5k race and family fun day.
The group's goals are to provide education and support, support research and, educate the public. Do visit the website for further information, or contact Hilary Rossen by e-mail or at the phone number listed.
Hydrocephalus Foundation (HyFI)
Greg Tocco - Executive Director
910 Rear Broadway
Saugus, Massachusetts 01906
781-942-1161
Email:
HyFII@netscape.net
Web:
www.hydrocephalus.org
The Northeast Ohio Hydrocephalus Support Group (NOHSG) was incorporated in April 2003. The group meets one evening a month to provide support and education to patients and families. Past speakers have included neurologists, neurosurgeons, nurses, child life, industry repre-sentatives, pediatricians and, other healthcare providers. They also hold an annual 5k race and family fun day.
Medical Associations
American Academy of Neurology (AAN)
1080 Montreal Avenue
St. Paul, MN 55116-2325
Phone: (612) 695-1940
Fax: (612) 695-2791
www.neurology.org
The American Academy of Neurology publishes the monthly journal, Neurology, and provides fact sheets and brochures on various neurological disorders, including brain tumors, epilepsy, headache, and head injuries. Their brochure, Epilepsy: What You Should Know, includes useful information for patients who have epilepsy. They also have a section on their web site called Neurology News, which provides people with the latest information on neurologic disorders.
American Association of Neurological Surgeons (AANS)
22 South Washington Street
Park Ridge, IL 60068-4287
Phone: (847) 692-9500
Fax: (847) 692-2589
Email:
info@aans.org
Web:
www.neurosurgery.org or
www.aans.org
American Board of Clinical Neuropsychology
Department of Psychiatry
The University of Michigan Hospitals
1500 East Medical Center Drive
Ann Arbor, Michigan 48109-0704
Phone: (734) 936-8269
Fax: (734) 936-9761
Web:
www.med.umich.edu/abcn
The American Board of Clinical Neuropsychology (ABCN) is the affiliated specialty board of the American Board of Professional Psychology (ABPP), which is responsible for the examination for the diploma in Clinical Neuropsychology.
American Board of Professional Neuropsychology (ABPN)
Michael J. Raymond, Ph.D.
Director, Neuropsychological/Cognitive Services
Allied Services
John Heinz Institute of Rehabilitation Medicine
150 Mundy Street
P.O. Box 2096
Wilkes-Barre Township, PA 18702
Phone: (717) 826-3800
Fax: (717) 826-3898
