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Resources
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VHL Family Forum: ISSN 1066-4130 Volume 2, Number 1 June 1994
Download a printable copy of this issue
- VHL Clinical Care Centers, by Susan Warnick
- World Focuses Attention on VHL - report from the Freiburg meeting
- Living with VHL, by Linda and Fred T., and their daughter
- Adoption and Medical History, by Joyce Maguire Pavao
- Having Babies, by Hannah N., Iowa
- VHL Gene Linked to Kidney Cancer,
- reviewing Gnarra et al, "Mutations of the VHL Tumour suppressor gene in renal carcinoma," Nature Geentics, May 1994
- Teamwork for Health: Report from the
Annual Meeting, Kansas City, April 15-17, 1994.
- When to Watch; When to Act?, strategies for kidney tumors, 1994
- Resources
- Ask the Family
- Time to Speak Up! by Polly Arango, Family Voices
- Disability and Challenge, by Fred J., New York
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Singular Vision Outreach
is a non-profit support organization for people with vision in only one eye. They have a very interesting publication which provides helpful driving tips for people with Singular Vision. For information or a copy of "Driving Tips," write to SVOR, P.O. Box 1451, Maryland Heights, MO 63043.
Planning your vacation
can be as important as buying the tickets. If you can't walk very far without tiring, or use a wheelchair, you may wish to contact the visitors' bureau in the cities you will be visiting, to ask for tips for accessible travel. Major tourist attractions themselves often have guidebooks, wheelchairs to rent or lend, or other accommodations for visitors who tire easily. Walt Disney World, for example, has a "special assistance pass" which can be used to obtain preferential access to many attractions. See "An Exceptional Visit to Disney," Exceptional Children Magazine, April 1994, pages 25-27.
Do you need information on adapting a job or workplace to accommodate special needs from a disability? Call the Job Accommodation Network, a program of the Presidents Committee on Employment of Persons with Disabilities, at 1-800-526-7234 (8:00 a.m. - 8:00 p.m. EST). Trained consultants are available to help employers, disabled people, and vocational rehabilitation personnel with just about any question concerning employment and disabilities. JAN also has a database of products for independent living, with user feedback. JANs address: P.O. Box 6080, Morgantown, WV 25606.
General Motors has a reimbursement program of up to $1,000 toward the cost of adapting or modifying a GM vehicle (new, dealer demo, or leased) for a disabled person. For specific guidelines, contact: GM Mobility Assistance Center, P.O. Box 9011, Detroit, MI 48202. (800) 323-9935.
Volkswagen has a Mobility Access Program which provides $1,000 in purchase assistance directly to anyone who buys a EuroVan to transport a full-time wheelchair user, or $500 in purchase assistance on any model Volkswagen for any buyer who requires adaptive driving equipment. See your Volkswagen dealer, or call 1-800-444-8987.
Apple Computer announced the opening of "Aisle 17," the Apple Computer Disability Solutions Store. Since 1985, when Apple Computer established its Worldwide Disabilities Solutions Group under the direction of Alan J. Brightman, Ph.D., Apple has been a leader in technology accessibility for children and adults with disabilities. In 1987, Apple collaborated with consumer groups to establish the Alliance for Technology Access (ATA), a nationwide network of community-based assistive technology resource centers. Now, with input from children and adults with disabilities, parents and professionals, Apple has created "Aisle 17," a mail-order disability solutions store dedicated to computing without boundaries. "Aisle 17" is the first one-stop source for bundled computer solutions designed specifically for children and adults with disabilities. For a complete shopper's guide, call 1-800-600-7808. TTY access: 1-800-755-0601.
1. National Kidney Cancer Association has a new computer bulletin board for those with an interest in kidney cancer: (708) 332-1052, IBM (compatible) PC, DOS, 2400/1200/300-baud modem, 8 data-bits, 1 stop-bit, full duplex, no parity/echo. Voice phone: (708) 332-1051. Free user guide available.
2. Educating the Child with Cancer, a new publication from Candlelighters Childhood Cancer Foundation, discusses issues of communication between families, school educators, and treatment centers, school re-entry, cognitive late effects, legal rights, and siblings. While VHL kids rarely deal with cancer, they do sometimes deal with chronic illness, extended absences from school, and the learning and family issues discussed in this booklet. Candlelighters Childhood Cancer Foundation, 7910 Woodmont Ave, Suite 460, Bethesda, MD 20814-3015. $7.50 to health professionals, free to families of children with cancer.
As published in the June 1994 VHLFF, 2:2. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org
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