Hi_ Andrew by gabyion


									                                       Foundation Focus
                      A Publication of the NJ Foundation for the Blind
                                      Volume 4, Issue 5

News from the Program Department:

Classes begin on Monday, September 11, 2006. We are very excited about several new classes,
Chef’s Hat II will focus on preparation of more complicated recipes using the skills learned in
Chef’s Hat I. In the area of assistive technology in addition to the Basics classes for JAWS
and Zoomtext we will begin a newly developed class that focuses on advanced email and internet
skills using JAWS or Zoomtext. Two of our Foundation Trustees have offered to share their
skills: Mary Ann Speenburgh will teach our new Bingo Blast class. She has a great deal of
experience playing competitive Bingo in various community settings so we fondly call her Dr.
Mary Ann. At the end of this class we hope that students will feel they have the skills to
participate in their community Bingo games. Janet Rowley-Cebula will conduct The ‘Eyes’ Have
It, a consumer oriented course that will focus on teaching students about their eye conditions,
various optical and non-optical aids and the roles of various vision professionals. The goal of
this course is to help participants become educated consumers of services. The next FOCUS
will have short biographies of our new instructors

Upcoming Events:

Save the Date for Halloween Open House, Saturday, October 28th, 2006. This year in addition
to family and friends, the Denville community will be invited to participate in the fun. Details
will be available soon so make sure to sign up early for this event.

Holidays at the Lodge is also being planned. There will be three one-week sessions with a
maximum of twenty participants for each week. This is a wonderful opportunity for you to
create gifts for the holiday season using the skills you have learned at the Foundation. The
week will be full of two hour classes for baking cookies, sewing gift bags, decorating holiday
wreaths or center pieces, creating computer generated holiday cards or letters, gifts in a jar,
the ever popular soap making class and many more options designed by the creative Foundation
staff. At the end of each day you will take home the wonderful gifts you create for your
family and friends.

There will be a small fee of $50 for the week to cover the cost of materials for all the projects
you create. If you need transportation there will also be a fee of $50 for transportation back
and forth for the week. The weeks are scheduled as follows:

Session 1- Monday, November 27, -Friday, December 1, 2006

Session 2- Monday, December 4-Friday, December 8, 2006

Session 3-Monday, December 11-Friday, December 15, 2006

There is a deadline of Tuesday, November 3rd, 2006 for registering to participate. Please call
Karen Galluzzi at 973-627-0055 X340 to sign up. You can pay the fees by check or credit card.

Google Labs Launches Accessible Web Search for Visually Impaired!

(Thanks to Art Wynne for sharing this article with our Focus readers so we are able to make
use of this improvement!)
Google has launched Google Accessible Search http://labs.google.com/accessible/ which is a
stripped down version of the Google search results page. The design was created to make it
easier and more effective for the blind and visually impaired. The results are a bit different,
tailored to the visually impaired, to show more accessible pages in the results. Google
Accessible Search looks at a number of signals by examining the HTML markup found on a web
page. It is built on Google Co-op's technology, which improves search results based on
specialized interests. It is also important to note that Google Accessible Search is currently ad
free. For example, conduct a search for ipod and you'll see no ads.

A Matter Of Taste

The NJBCA (New Jersey Blind Men's Association) Camp Happiness has published a Cook Book
entitled "A Matter of Taste" as a fund raiser for improving their facilities for their Day
Campers and members in and around the Leonardo area. Camp Happiness is celebrating their
100 Year Anniversary for serving the Blind and Visually Impaired in New Jersey. This lovely
printed Cookbook is a beautifully Hard-bound Book, with tabs for locating different categories
of various recipes including soups, entrees, appetizers, with helpful tips for measurements and
substitute ingredients when cooking. The recipes are all contributed by Members of Camp
Happiness and the Day Campers. The price is only (Ten) $10each and would make a beautiful
Holiday Gift. It might make a nice stocking stuffer for a hard-working, sighted Mom or

Understanding Aunt or Daughter.      Supporting this fund-raiser would be helping our fellow
visually Impaired New Jersey neighbors get assistance in their own Community.

Send your check to:
 Mr. Doug Scott, c/o NJBCA
Camp Happiness-Cookbook
18 Burlington Ave.
Leonardo, NJ 07737

Make check payable to: NJBCA Camp Happiness, and put "Cookbook" on Memo line. Remember
to send your name and address along with your check. The Book will be mailed to you at no
additional charge. Camp Happiness thanks you for your generosity!

The Prodigy is a talking blood glucose meter!

** I want to make a few comments on the article below, which was sent to me by Pat Healy last
month. I am a diabetic taking pills to regulate my condition. I have never tested my blood
before, and decided it was time to try with this talking meter. I called and ordered one about a
month ago. When it arrived, there was paper work to fill out in order to get the meter and
supplies free if you have met your Medicare deductible. You also need a sighted person to
teach you how to use the meter. After a few hours, and quite a few wasted strips and needles,
I had it pretty much figured out. I now test my blood sugar independently whenever I want or
need to. This meter uses a very small amount of blood to work and makes a sound when the
blood is on the right spot. It works very well and the voice is very clear. I would recommend it
to all Visually Impaired persons who are diabetic and use oral medication or insulin for
regulating their condition. Mary Ann Speenburgh

The Prodigy is a talking blood glucose meter from Taiwan. Truly tiny, it measures 3-7/8 inches x
1-3/4 inches x 15/16 inch. It talks: the meter incorporates speech synthesis. The Prodigy's
screen is clear and bright, and screen numbers are 5/8 inch tall. The meter uses "state-of-the-
art" capillary action, touchable test strips (no "hanging drop of blood") and tests across a 20
mg/dl to 600 mg/dl range, with a tiny (0.6 µl) blood sample. The Prodigy meter is available,
right now. The meter costs $30.99, and a box of 50 strips costs $18.95. Order five boxes of
strips, and the meter is free. Medicare beneficiaries who have met their deductible can get the
meter and supplies for free. It has already been FDA-approved.

The supplier is:
Diagnostic Devices, Inc.

PO Box 227397
Miami, FL.

You should contact the retailer:

Diabetic Support Program
3381 Fairlane Farms Road
Wellington, FL 33414
Telephone: 1-800-990-9826
Web site: www.prescriptionsplus.com

New Diabetic/Blind Forum

Hello -- My name is John, and I just started an online forum for blind computer users, as well as
Diabetics. It's called The Lights Out Forum, and can be found at:
I've been a Diabetic for 30 years, and I lost my eyesight 10 years ago. I use an insulin pump, a
guide dog, and am a stay-at-home-dad. All of these topics are talked about on the forum, as well
as many others, too!

My goals were to create a place where people can find support, and also give support to others,
too. I know there are alot of places on the internet that deal with these topics, but I've never
run across a forum where it's all talked about in one place. Registration is free, and there's no
advertising on it.

Facts about new Drugs for Wet Macular Degeneration!

Genentech Inc.'s keenly anticipated drug Lucentis has won U.S. approval for treating the
leading cause of blindness in the elderly, the company and regulators said. The U.S. Food and
Drug Administration cleared Lucentis for treating vision loss from the wet, or more severe,
form of age-related macular degeneration (AMD). In clinical trials, Lucentis not only halted
vision loss from AMD but also restored vision in some patients.

About one-third of patients in Genentech studies had improved vision at 12 months, the FDA
Lucentis is the first treatment which, when dosed monthly, can maintain the vision of more than
90 percent of patients with this type of AMD. Lucentis is a new molecular entity (NME),
meaning it contains an active substance that has never before been approved for marketing in

any form in the United States. Lucentis will be the first FDA--approved product to provide
prescription information in the new format for prescription drug package inserts, to provide
professionals and consumers clear and concise prescription information.

"This approval is of great importance for the 155,000 Americans who are diagnosed each year
with AMD, a common cause of severe and irreversible vision loss in older adults," said Dr.
Andrew von Eschenbach, Acting Commissioner of Food and Drugs. "At a time when our elderly
population is rapidly increasing, this product preserves quality of life for those affected by this
disease, helping them to regain the ability to participate in everyday activities such as reading
and driving."

AMD, a retinal disease causing severe and irreversible vision loss, is a major cause of blindness
in individuals older than 55 years. Untreated, the majority of eyes affected with wet Macular
Degeneration may become functionally impaired. Wet AMD, which accounts for 10 percent of all
AMD, is responsible for 80 percent of the associated vision loss.

The vision loss in wet AMD is caused by the growth of abnormal leaky blood vessels that
eventually damage the area of the eye responsible for central vision.

 The drug called Lucentis treats the wet form of age- related macular degeneration, a disorder
where blood vessels behind the retina leak blood and fluid, worsening vision and often causing
blindness. Lucentis, made by Genentechnolgy, Inc., a South San Francisco, Calif., biotechnology
company, inhibits the growth of blood vessels when injected into the eye. Note: the research
on this new drug shows that 80% of the patients in clinical trials regain vision and 40% of the
patients regain enough eye sight to be able to drive again.

Industry analysts expect Lucentis to dominate the market and provide tough competition for
another AMD treatment, Macugen from OSI Pharmaceuticals Inc. and Pfizer Inc. Both drugs
are given by injection into the eye. About one-third of patients in Genentech studies had
improved vision at 12 months, the FDA said.

A new drug coming on the market promises nothing short of a miracle: Some elderly people who
were going blind will be able to see enough to read a book or drive a car once again. But an older
drug already on the market and much less expensive accomplishes the same thing. It was
developed to treat cancer, but the side benefit of restoring sight in the elderly was discovered
along the way.

Which drug should doctors and patients choose? It's a dilemma that triggers broader questions
about what's driving U.S. pharmaceutical markets – and raising the cost of health care.

Lucentis is the drug recently approved by the Food and Drug Administration for the treatment
of wet macular degeneration. But since January, Dr. William Dunn of the Florida Retina
Institute in Daytona Beach has been treating macular degeneration and other eye diseases with
Avastin, a drug that's been on the market since 2004 for treating colorectal cancer and, in
Dunn's office, costs a fortieth of Lucentis' $1,950-per-dose price. "The results have been
absolutely amazing," Dunn said of Avastin. "I've had patients who have been legally blind
recover vision to 20/40 (legal to drive) and even occasionally a 20/20."

The Daytona Beach ophthalmologist and others in his field are using Avastin "off-label" -- for
something other than what it received its initial FDA-approval for. So far, his patient, Joanne
MacDonald, 66, of DeLeon Springs likes what she sees since receiving her first injection of
Avastin into her right eye last month.

"I can see TV and write my checks out," said the retired restaurant owner. Wet-form macular
degeneration, the most likely to cause blindness, forms when abnormal blood vessels start
leaking into the retina, the light sensing part of the eye. The fluid causes vision to warp and
damages the macula, the part of the eye that allows people to read and see finer details. Until
recently, doctors could only slow the descent into darkness from the disease. After being
injected into the eye, Lucentis and Avastin, both derived from the same type of mouse
antibody, binds onto the material in the eye that is causing the blood vessels to form and slows
the progression of macular degeneration. Both drugs are administered monthly. The same
company, Genentech, makes both drugs, but has no plans to do the formal testing on Avastin
that would result in it becoming FDA-approved to treat eye disease.

Even though thousands of patients have been treated with Avastin with good results, Lucentis
has been developed specifically for ophthalmic use and Avastin hasn't, said Dawn Kalmar,
spokeswoman for Genentech. She emphasizes that when Medicare approves Lucentis for
reimbursement, as expected in the coming weeks, the cost to the patient will be about a $50 a
payment per dose. And even patients who can't afford that will be eligible for help from
Genentech, she said.

Once Medicare approves reimbursement, crucial because Lucentis mostly treats diseases that
effect older people, Ophthalmologist Dunn said he expects that he and most of his colleagues
will start administering Lucentis as a rule. But he said it's frustrating knowing that Lucentis will
cost the health care system and society (particularly taxpayers) more than another, less

expensive drug that likely relieves the symptoms of macular degeneration just as well, if not
better. "We're taking money from the Medicare pot and sliding it over to big Pharma," Dunn
said, using the common word for the nation's big pharmaceutical companies. "They take their
research and marketing costs and come up with a figure on how much the market will bear."
Now Dunn's patients sign a six-page consent form explaining Avastin's off-label status for eye
disease treatment and details about possible complications. He said he has no doubts about the
cancer drug's safety or effectiveness in treating eye disease. "Our practice has performed
over 1,000 Avastin injections thus far with no adverse outcomes," he said. "Off label use of
medications is very common in the United States."

At Central Florida Retina Associates, which has an office in Daytona Beach, the retina
specialists have already embraced the use of Lucentis. Its trials show that not only did it slow
macular degeneration, but a third of the patients taking Lucentis had their vision improve -- a
finding that could put it in great demand as a wave of Baby Boomers hit their elderly years.

Dr. Saad Shaikh, an affiliate assistant professor at the University of South Florida, College of
Medicine who works as a consultant at Central Florida Retina, has participated in Lucentis'
clinical trials and administered Avastin for macular degeneration. "Avastin produces very good
results, perhaps as good as Lucentis, but we cannot be sure because it never went through the
rigors of proper, clinical study" for use in the eye, Shaikh said. "(Avastin's) use in the eye was
only extrapolated and pursued off anecdotal reports of its benefit. We can be sure of Lucentis'
effectiveness because of its long study process involved in FDA approval and me personally
because I have used both."

Ann DeMarco, 80, of Daytona Beach was getting ready for her first shot of Avistan. Her vision
has been poor for a number of years. "I need you to look up a little more to the right," Dr.
Suzanne Demming, a retina specialist, told DeMarco as she held the shot. She injected the
medication into DeMarco's left eye. "That's it!" she said. From numbing the eye to the shot,
the pain-free procedure took less than 10 minutes.

Dr. Philip J. Rosenfeld, a professor of ophthalmology at Bascom Palmer Eye Institute at the
University of Miami, pioneered the use of Avastin while he was part of the clinical trials
involving Lucentis. He said that this situation in which one company is making two drugs that
treat the same disease is virtually unprecedented, and points out why the public shouldn't
count on pharmaceutical companies to set the agenda for determining the most safe, effective
and affordable treatment for any disease. "Genentech is a business," he said. "They have
developed a fabulous drug. It makes no sense for them to now spend a lot of money getting
another one of their drugs approved to compete against their own product."

Choose Happiness!

A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight
o'clock, with his hair fashionably coifed, even though he is legally blind, moved to a nursing home
today. His wife of 70 years recently passed away, making the move necessary. After many
hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his
room was ready. As he maneuvered his walker to the elevator, I provided a visual description of
his tiny room, including the eyelet sheets that had been hung on his window "I love it," he stated
with the enthusiasm of an eight-year-old having just been presented with a new puppy. "Mr.
Jones, you haven't seen the room; just wait." "That doesn't have anything to do with it," he
replied. "Happiness is something you decide on ahead of time. Whether I like my room or not
doesn't depend on how the furniture is arranged ... it's how I arrange my mind. I already
decided to love it, "It's a decision I make every morning when I wake up. I have a choice; I can
spend the day in bed recounting the difficulty I have with the parts of my body that no longer
work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as
my eyes open I'll focus on the new day and all the happy memories I've stored away. Just for
this time in my life.

Remember that we all can choose the positive over the negative, the smile over the frown every
day of our lives!

Free Legal Advice for Disabled!!

Legal help for disabled persons in New Jersey!
In 1984, NJCBVI established a partnership with the Community Health Law Project (CHLP),
funding an innovative program that provides legal and advocacy services for people who are blind
and visually impaired and cannot afford a private attorney. CHLP is a non-profit legal and
advocacy services organization founded in 1976. In addition to legal and advocacy services,
CHLP also provides training, education, and has other special programs for persons with
disabilities, the elderly and organizations representing their interests. With an emphasis on
those most vulnerable and needy, CHLP services include: Entitlements: Social Security
benefits, welfare, food stamps, and other benefits, Assistance for eligibility and overpayment
disputes, securing back payments and retroactive awards, claim adjudication delays, etc.; Health
Insurance: Filing appeals and grievances related to Medicaid, Medicare, Managed Health Care
Programs, distributes a free consumer rights guide; and will provide training throughout the
state to consumers and professionals upon request; Family Matters: Child support, visitation,
domestic violence, legal separations, and Special Trusts for adult children with disabilities;

Housing Issues: Enforcement of state and federal fair housing laws related to barrier-free
accessibility and discrimination, affordable housing, boarding homes, rooming housing,
residential care facilities, evictions, housing habitability, and other landlord-tenant disputes;
Consumer Protection: Debt collection, medical, installment and credit contract disputes, utility
bill disputes and termination mediation.
CHLP has offices in each region of NJ.

To find out more about CHLP services and programs:

973-275-1175 (voice); 973-275-1721 (TTY)
e-mail: chlpinfo@chlp.org
web site: www.chlp.org

Remember A Loved One
In Joy As Well As Sorrow!

The New Jersey Foundation for the Blind has a special fund called Evergreen. By directing a
donation to the Foundation in the name of a loved one or friend, you can have a birthday,
wedding, anniversary, or graduation, etc. card sent to this person or persons in your name. It's a
lovely way to acknowledge a special occasion of joy, as well as the passing of someone who is
dear to you. The donation also enables you to help a Blind or Visually Impaired person to improve
their lives. If you would like to make an Evergreen donation by credit card, you can pay with
your Visa, MasterCard, or Discover card over the phone.

For further information, call the lodge at (973) 627-0055, extension 335. Our Executive
Director, Donna Meade, will be happy to assist you.

In Closing…

As always, we hope you have enjoyed this issue of our Foundation Focus. Remember that you
may call our receptionist at 973-627-0055 to receive future issues in any of the formats that
we offer including: regular print, large print, Braille, cassette, and E mail. And don’t forget to
look us up on the web, at http://www.njffb.org . If you would like to directly send me feedback
or suggestions about the Foundation Focus, you can email me at maryann231@aol.com

Thank you for reading,
Mary Ann Speenburgh


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