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Upcoming Events:
Seattle to Portland Bike Ride Pasta Party for participants and sponsors - July 16
Location: TBD
Seattle to Portland Bike Ride - July 17 - 18, 2010
Rock & Roll Marathon--Seattle. June 26, 2010.
Pasta dinner on June 25, 2010. Location tbd.
Cindy Rulon will be the contact person.
New Support Service For NF Families and Patients
Quarterly NF Discussion with Medical Providers.
Location: Seattle Children's Hospital - Rooms G1026 and G1027
When: Monday, March 29, 2010
Time: 6:00 PM - 7:30 PM
Parents and friends of Children with NF. Pediatricians and other specialty providers. Teachers and Caregivers.
Childcare will be provided.
To register contact Cindy Chernoff Admin/Program Asst. Genetic Medicine, A7937
Seattle Children's Hospital
4800 Sand Point Way NE
Seattle, WA 98105
Phone: 206-987-1248
Fax: 206-987-2495
Informal Q & A led by Stephanie Wallace, MD Assoc. Director Multidisciplinary Programs.
NF Medical symposium
Friday, July 16, 2010
Seattle Children's Hospital
4800 Sandpoint Way Northeast Seattle, WA 98105.
Time: 2:00 PM -6:00 PM
For information on this event contact Dave Stob
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or 206-227-1336
If you would like further information on the Washington Chapter and how to get involved, host an event, and connect with the local NF community please email us at
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The Second Annual NF Forum: Patient and Family Medical Symposium will be held in Las Vegas from April 9 - 11, at the Green Valley Ranch Resort. Last year's event was a huge success with more than 180 people learning a great deal of valuable information while connecting with other families and sharing experiences.
This gathering promises to be another wonderful weekend featuring experts in the field of NF research and clinical care. Attendees will meet other parents, children, and adults affected by NF, learn a great deal about the disorder and methods of management and share their experiences with one another. Plus you will have the opportunity to get practical advice on the challenges of dealing with NF and an opportunity to gain support from a knowledgeable, understanding community. Support opportunities include: Welcome Reception, meals, breaks, specific breakout sessions, and the NF Walk. For more information or to register visit http://www.ctf.org/Patient-Info/nf-forum-for-2010.html or call 800-323-7938 x236.
For information on upcoming meetings and events please email:
Dave Stob "acting" President
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Download: The NF School Connection -- a brochure designed to help address your child's
educational needs. "How To" Information Packet click here!
The brochure was created with the generous assistance of the Community Fund of Boeing Puget Sound.
We would like to thank Nancy Dunbar for her work on behalf of NF. Please feel free to read the paper Nancy Dunbar presented to a recent conference. Nancy investigated the question of whether primary care physicians understand the significance of multiple cafe au lait spots and how they refer patients. You may download Nancy's paper by clicking here: Nancy's Paper
We would like to thank Mrs. HeeWon Livingstrone of Wakefield, Massachusetts for her translation of an NF Brochure related to education. Please click the following links to access pages of the KOREAN TRANSLATION: page 1, page 2, page 3, page 4, page 5, page 6, page 7.
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NF Medical Resources in Washington State
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University of Washington - Adults
Medical Genetics Clinic
ADULTS Only NF1 & NF2
Clinical Genetics & Genetic Counseling Only
Will refer to other specialists
Clinic opens: Tues/Thurs AM
Robin Bennett, MS (Coordinator)
Box 357720
1959 NE Pacific St.
Seattle, WA 98195-7720
Tel: 206-616-2135
Fax: 206-616-2414
Dr. Wylie Burke
Dr. Wendy Raskind
Dr. Virginia Sybert
Dr. Marshall Horwitz
Dr. Gail Jarvik |
Children's Hospital & Regional Medical Center
Darci Lise Sternen, MS (coordinator)
PO Box 5371/CH-25
Seattle, WA 98105
Tel: 206-987-2056
Fax: 206-987-2495
Dr. Ian Glass — Dr. Melissa Parisi
Dr. Roberta Pagon — Dr. Mark Hannibal
Dr. Michael Raff — Dr. Phillip Chance
Virginia P. Sybert, M.D.
Pediatric Dermatology
206-326-2111
CHILDREN Only —NF1 & NF2
Dr. Gerald Milstein, Pediatric Neurologist
Tel 206-526-2000
Clinic opens: 9-4 PM Tuesdays
*Sometimes travels to clinics in Eastern WA and Alaska
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Washington Affiliate
