Download POP Eyes - Foundation Fighting Blindness

FUNDRAISING KIT
www.VisionWalk.org
Welcome!
I.
About VisionWalk
II.
Team Fundraising
II.
Fundraising Tools
III.
Online Fundraising
IV.
Fundraising Ideas
Together, a cure is in sight!
About VisionWalk
Since its inception in the Spring of 2006, VisionWalk has raised over
$28 million to fund sight-saving research. As promising treatments
move into critical human studies, the need for research funding is
greater than ever.
VisionWalk is a signature fundraising event of the Foundation Fighting
Blindness, a 501(c)(3) tax-exempt organization. Over 10 Million
Americans are affected by blinding retinal diseases including macular
degeneration, retinitis pigmentosa and Usher syndrome. The
Foundation Fighting Blindness is working to find treatments and
cures for these devastating diseases. By funding leading edge
research in area such as genetics, gene therapy, transplantation,
artificial retinal implants and pharmaceutical and nutritional
therapies. The Foundation Fighting Blindness is making a difference
today to make the world a brighter place for those suffering with
retinal degenerative diseases.
Together, a cure is in sight!
Team Fundraising
Step 1:
Register your team!
Step 2:
Ask others to join your fight for sight!
Step 3:
Talk the walk!
Once you have registered your teams and recruited team members,
encourage each member to fundraise. Keep your team members
motivated and excited about VisionWalk. Make sure your team has
materials available (posters, brochures, POPEyes) so they too can talk
the walk!
Successful Team Fundraising Guarantee!
Asking everyone on your team to fundraise will guarantee a successful
VisionWalk team!
Make sure your team has materials available (posters, brochures,
POPEyes) so they too can talk the walk!
Distribute copies of the sample fundraising letter and email for team
members to copy and send. Email is a fast, inexpensive and easy way
to get the word out and raise money!
Keep your team members motivated and excited about VisionWalk.
Send weekly email updates or make weekly phone calls with the latest
Together, a cure is in sight!
VisionWalk information, fundraising ideas, and any success stories
from your team members.
Fundraising Tips
●
Dedicate your fundraising efforts to an individual living with
retinal degenerative disease. Walk and raise funds in their
honor. Putting a face with the cause helps donors realize the
impact of the disease.
●
Arm yourself with facts about retinal degenerative disease
and Foundation Fighting Blindness. Let your donors know
that their donations will benefit the millions of Americans living
with visual impairments. Visit www.FightBlindness.org for more
information on what we do and how you can help.
●
Be enthusiastic! Whether asking for a donation or for someone
to join your team, your enthusiasm will be contagious. Others
will want to support.
●
Set a team goal and aim high! Don’t be afraid to ask others to
support you. When they see your enthusiasm, they will give.
Share your goal with every donor you ask.
●
Thank your donors! With their help, we can cure blindness!
Thank your donors and tell them what a difference they are
making in the lives of millions!
Together, a cure is in sight!
How to raise $250
When you register, donate $25 to yourself
$25
Ask two friends for a $25 donation
Ask your doctor’s office for a $25 donation
$50
$25
Ask four family members for a $20 donation
$80
Ask three neighbors for $10 donations
$30
Ask three local merchants for $10
$30
Take a week’s work of your morning coffee
money and put it towards your fundraising
Together, a cure is in sight!
$10
Fundraising Tools
VisionWalk Poster and VisionWalk Brochure
Together, a cure is in sight!
VisionWalk POP Eyes
VisionWalk Point of Purchase Program (POP Eyes)
This easy and effective program typically runs for a one-month period.
Once you review the materials and are committed to the campaign,
please contact Natalie Linton at 919-781-8014 or
[email protected] to request a supply of POP Eyes and
begin your fundraising! Your Events Manager will be in touch with
you at the end of your campaign to check in on your success – or feel
free to forward your donations directly to the address below.
Enclosed in this “Starter Kit” you will find:
• Information about The Foundation Fighting Blindness
• Information about VISIONWALK – all proceeds of POP Eyes will
benefit your local VISIONWALK event
Together, a cure is in sight!
• Tracking Chart
Please do not send cash through the mail. We recommend money
orders, personal, business or cashier’s checks.
Foundation Fighting Blindness
Attn: Natalie Linton
4600 Marriott Drive, Suite 340
Raleigh, NC 27612
Foundation Fighting Blindness TAX ID# 23-7135845
Together, a cure is in sight!
POP Eye Ideas!
• Ask your eye doctor to see POP Eyes in their office and display in
their lobby
• Ask a local store your frequent to sell POP Eyes
• Sell POP Eyes in your office to co-workers and decorate your
cubicle or office
• Ask your kids’ school if they would host a POP Eye Campaign
and decorate the halls with POP Eyes
• Hold a POP Eye campaign in your church
• Ask your gym to sell POP Eyes
• Ask a local restaurant to sell POP Eyes
•
Ask your dry cleaner, gas station, and other local businesses you
frequent
The sky is the limit! Ask everyone to help you by hosting a POP Eye
campaign!
Together, a cure is in sight!
POP Eye Tracking Chart
Date
Number Sold
Donation Amount
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TOTALS
Together, a cure is in sight!
Daily Total
Online Fundraising
Your Participant Center
Your Participant Center is a tool that allows you to create and edit
your fundraising website and send emails to your contacts that will
direct them to your website.
Helpful Participant Center Hints
▪ If you are a team captain, you will have access to the team page and
your personal fundraising page.
▪ You will be required to enter a login and password. When you
register online for VisionWalk, you will be prompted to create these. If
at anytime you forget your login or password, please contact your
Events Manager or their assistant. They can create a new login and
password for you.
▪ When you import your contacts to send emails from your participant
center, you have many options. Most people find it easier to
download their email contacts to a .csv file and load that file in to the
participant center.
▪ Do not send more than 100 emails at a time from your participant
center. Some mail services will block these emails to protect from
SPAM.
Together, a cure is in sight!
Logging in to your Participant Center
Together, a cure is in sight!
Pick your VisionWalk
State
Inside your Participant Center
Together, a cure is in sight!
Step 2
Step 1
STEP 1:
Make sure the goal you set when you registered is reflected here. This
is what your thermometer will show on your fundraising website. If it
is not correct, select change and follow the instructions.
STEP 2:
Select the PERSONAL PAGE tab at the top of the page to create/edit
your personal page. Your personal page can be edited anytime
during your VisionWalk fundraising.
Together, a cure is in sight!
Editing your Personal Fundraising Page
Step 4
Step 1
Step 2
Step 3
STEP 1:
Create a title for your webpage. This is the first greeting your website
visitors will see.
STEP 2:
Create a greeting message. This can be short and sweet, or your
VisionWalk story – why you are committed to raising money for crucial
research!
Together, a cure is in sight!
STEP 3:
Select a Page Layout. There are four to choose from. This will dictate
what your page will look like to your website visitors.
STEP 4:
Click on Photos/Videos if you want to share a photo or video. If you
do not use your own photo, the system will select a default VisionWalk
photo.
CONGRATULATIONS! Your personal page is complete!
Together, a cure is in sight!
Sending emails from your Participant Center
Step 1
Together, a cure is in sight!
Step 4
Step 2
Step 3
STEP 1: Select the EMAIL tab on the home page.
STEP 2: Click on Contacts link for instructions on contacts.
STEP 3: Create the email message (subject & body).
STEP 4: Send!
When you send an email from your participant center, the email
will include a link to your personal page.
Together, a cure is in sight!
Fundraising Ideas
▪ SHARE YOUR VISIONWALK STORY! Tell others why you are raising
money and what it means to you. People give to people!
▪ Email your friends, family and colleagues through your participant
center and ask them to make an online donation
▪ Ask everyone to support you, especially those you have supported
through Girl Scout Cookies, Sports Teams, etc.
▪ Write letters to friends and family
▪ Host a fundraiser in your home
Blindfolded dinner
Game Night
Yard Sale
Car Wash
Babysitting Night
Wine Tasting
▪ Host a fundraiser at work
Put a donation jar on your desk
Sell POP Eyes
Sell candy or baked goods
Host a jeans day
▪ Employer Matching Gifts! Ask everyone who donates to your team
to find out if their employer has a matching gifts program. This is an
easy way to DOUBLE a donation!
▪ Ask your church or civic/social group to help you fundraise!
Together, a cure is in sight!
Contact Information
Thank you for supporting VisionWalk! For more questions or ideas,
please contact your Events Manager at the South Region office. We
are here to help you achieve your fundraising goal!
Lesley Ireland, Events Manager [email protected]
VisionWalks: Charlotte, Triangle, Atlanta, South Carolina
Natalie Linton, Events Manager [email protected]
VisionWalks: Triad, Birmingham, Ft. Lauderdale, Nashville, Orlando, Virginia Beach
Kim Marlow, Regional Director of Events [email protected]
VisionWalks: Tampa, Jacksonville
Kensi Mangum, Assistant
[email protected]
VisionWalks: Tampa, Jacksonville, Ft. Lauderdale, Birmingham, Orlando
Tessa Salottolo, Assistant [email protected]
VisionWalks: Charlotte, Triangle, Atlanta, Triad, Nashville, South Carolina
South Region Office
4600 Marriott Drive, Suite 340
Raleigh, NC 27612
Office 919-781-8014 Fax 919-781-8266
Kim Marlow 954-496-0776
Together, a cure is in sight!
FOUNDATION OVERVIEW
Passion and Focus
The Foundation Fighting Blindness was
established in 1971 by a passionate
group of individuals driven to overcome
vision-robbing retinal degenerative
diseases that were affecting themselves
or loved ones. At the time, very little
was known about these devastating
conditions.
Key Facts about the Foundation
• Over the past 42 years, the
Foundation has raised more than
$500 million to put an end to retinal
degenerative diseases.
• Throughout its history, the
Foundation has invested more than 75
percent of its revenue in research and
public health education programs.
The Foundation’s goal was clear: To
drive the research that would lead to
• The Foundation has 50 volunteerpreventions, treatments and cures
led chapters across the U.S. These
for the entire spectrum of blinding
dedicated volunteers raise funds,
retinal diseases – including macular
increase public awareness, and provide
degeneration, retinitis pigmentosa, and
support to their communities.
Usher syndrome – that
together affect more than
Over the past 4 decades, the Foundation
10 million Americans and
has raised more than $500 million to put an
millions more throughout
the world.
end to retinal degenerative diseases.
Today, the Foundation is a
thriving national nonprofit
and the world’s leading private source
for retinal disease research funding.
FFB is committed to driving research
until the entire spectrum of retinal
degenerative diseases is eradicated.
Foundation Overview
• The Foundation’s national signature
events, VisionWalk and Dining in the
Dark, raise money for research, as
well as public awareness about the
devastating impact of retinal diseases.
SUMMER 2013
Foundation Overview
Driving Research, Saving Vision
Foundation-funded researchers are achieving remarkable success with a wide range
of promising therapies for saving and restoring sight. Below are just a few examples of
the research that is providing hope to millions affected by retinal diseases
Gene Therapy Restores Vision
The Foundation is funding clinical trials
of gene therapy that have restored
vision in patients who were virtually
blind from a childhood form of retinitis
pigmentosa. Thanks to the treatment,
they can now enjoy some of life’s simple
joys, like reading and playing baseball.
Harnessing the Power of Stem Cells
Foundation-funded researchers are
using stem cells derived from a variety
of sources, including a person’s own
skin, to create healthy retinal cells that
can potentially restore vision. Stem
cell treatments hold great promise for
people with advanced vision loss.
Repurposing Approved Drugs to
Preserve Vision
Valproic acid, a drug that is FDAapproved to treat epilepsy, has shown
promise for preserving vision in people
with autosomal dominant forms of
retinitis pigmentosa. The Foundation
has launched a human trial to test this
drug and, if effective, move it quickly
out to patients who need it.
Funding the Best in Retinal Research
The Foundation has funded studies
at hundreds of prominent institutions
throughout the world including:
• Wilmer Eye Institute, Johns Hopkins
University School of Medicine
• Massachusetts Eye and Ear Infirmary, Harvard Medical School
• Insitut de la Vision in Paris, France
• Moorfields Eye Hospital, University
College London
• Scheie Eye Institute, University of
Pennsylvania
“The Foundation has given hope to people who didn’t previously have
hope, and supported the most important retinal research being carried
out anywhere in the world. Thanks to the Foundation, I am confident that
we will be able to treat many retinal diseases in the near future..”
– Morton F. Goldberg, M.D.
Johns Hopkins University School of Medicine
Foundation Overview
SUMMER 2013
AGE-RELATED
MACULAR DEGENERATION
What is age-related macular
degeneration?
Age-related macular degeneration,
commonly referred to as AMD, is a
retinal degenerative disease that causes
a progressive loss of central vision. AMD
is the most common cause of vision loss
in individuals over the age of 55.
More than 10 million people in the
United States have AMD.
or warped. As the disease progresses,
blind spots may form within the central
visual field. In most cases, if one eye has
AMD, the other eye will develop the
disease. The extent of central vision loss
varies depending on the type of AMD
— dry or wet.
What is dry AMD?
Dry AMD accounts for about 90 percent
of all cases, and normally affects vision
less than wet AMD. A characteristic of
dry AMD is the accumulation of tiny
protein and fat-containing “drusen”
deposits in a thin layer of cells in the
retina called Bruch’s membrane. The
origin of drusen is unknown, but
What is the biology behind AMD?
The macula is a small region in the
center of the retina that enables
a person to see fine detail. Light
sensing cells in the macula, known
as photoreceptors,
convert light from the
Extensive information on research and
visual field into electrical
treatments for AMD, as well as resources
impulses and then
transfer the impulses to
for individuals living with AMD, are
the brain via the optic
available at www.FightBlindness.org
nerve. Central vision loss
from AMD occurs when
photoreceptor cells in the
macula degenerate.
they may be from waste products of
various cells and tissues of the retina.
What are the symptoms of AMD?
Drusen may interfere with the health
People with AMD may first notice a
of the macula, causing progressive
blurring of central vision, especially
degeneration of the photoreceptor
during tasks such as reading or sewing.
cells.
Also, straight lines may appear distorted
www.FightBlindness.org
Winter 2013
Age-Related Macular Degeneration
Reduction in central vision from dry
AMD occurs gradually over many years.
Vision may even remain stable between
eye examinations. People with dry AMD
do not usually experience a total loss
of central vision, but tasks that require
finely focused vision may become
more difficult. Research suggests that
medium and large-sized drusen present
a greater risk for the progression of dry
AMD to wet AMD, which causes more
severe vision loss.
What is wet AMD?
Wet AMD accounts for about 10 percent
of all cases of macular degeneration.
With wet AMD, abnormal blood vessels
grow beneath the macula. These vessels
leak blood and fluid into the macula
that damage photoreceptor cells. Wet
AMD often progresses rapidly and can
cause substantial loss of central vision.
What treatments are available
for wet AMD?
Excellent progress is being made in
understanding, predicting and treating
wet AMD. Scientists have discovered
new causes of the disorder, as well as
possible risk indicators.
Numerous pharmaceutical companies
are developing wet AMD treatments.
AREDS formulation — The AgeRelated Eye Disease Study (AREDS) — a
landmark investigation conducted
www.FightBlindness.org
by the National Eye Institute (NEI)
— determined that antioxidant
supplementation can slow the
progression of AMD. The AREDS
formulation is an over-the-counter
antioxidant supplement recommended
for people who are at risk of developing
more advanced forms of either dry or
wet AMD.
The AREDS formulation includes the
antioxidants beta carotene, vitamin E,
and vitamin C, as well as the nutrients
zinc and copper. The AREDS formulation
contains specific amounts and forms
of antioxidants nutrients; do not try
to substitute multivitamins or dietary
nutrients for the AREDS formulation.
The NEI has initiated a second AREDS
study (AREDS2) to evaluate the
potential benefits of the antioxidants
lutein and zeaxanthin and the omega-3
fatty acids docosahexaenoic acid (DHA)
and eicosapentaenoic acid (EPA). For
more information on the second AREDS
study, visit www.areds2.org.
EYLEA™ (alflibercept) — Regeneron’s
wet AMD treatment, Eylea, blocks
the development of unhealthy
blood vessels underneath the retina.
Regeneron reports that in clinical trials,
Eylea treated wet AMD as effectively
as Lucentis, but with fewer intraocular
injections. Typically, patients are treated
monthly with Eylea for three months
Winter 2013
Age-Related Macular Degeneration
and every other month thereafter. Eylea
was FDA approved in 2011.
Lucentis™ (ranibizumab) — Developed
by Genentech, Lucentis is effective in
reducing the risk of losing vision from
the abnormal blood vessel growth
under the retina associated with wet
AMD. The treatment was approved
by the FDA and made available in
2006. A two-year study showed that
95 percent of people with wet AMD
who received monthly injections of
Lucentis experienced no significant
loss in visual acuity. Genentech also
reported moderate visual improvement
in 24.8 percent of participants treated
with a 0.3 mg dose of Lucentis and 33.8
percent of participants treated with a
0.5 mg dose.
A colorectal-cancer drug called
Avastin® — a drug similar to Lucentis
— has been used “off-label” by some
ophthalmologists to treat wet AMD.
A few small clinical studies of short
duration (e.g., three months) have
shown Avastin to be safe and effective.
The NEI is currently conducting a clinical
study of Avastin for the treatment of
wet AMD to better determine the drug’s
long-term safety and effectiveness. In
this study, Avastin is being compared
to Lucentis. Interim, one-year results of
the study showed that the drugs were
similar in safety and efficacy.
www.FightBlindness.org
Macugen® (pegaptanib) — Available
since 2004, Macugen has been effective
in reducing the risk of vision loss in
people with wet AMD by inhibiting
the growth of abnormal blood vessels
under the retina. Typically, Macugen is
administered every six weeks through
an injection into the eye. In clinical
studies, approximately 70 percent
of patients treated with Macugen
experienced no significant vision loss.
Visudyne® (verteporfin) Photodynamic
Therapy (PDT) — Visudyne PDT involves
the use of a light-activated drug
that targets and destroys the blood
vessels that cause vision loss in wet
AMD. In this treatment, Visudyne is
injected intravenously. When the drug
reaches the eye, a low-intensity laser is
directed to the region of blood vessel
growth, activating the drug, which
destroys the unhealthy vessels. PDT
treatments are usually repeated, and
may be performed in combination with
other treatments such as Macugen or
Lucentis. Visudyne became available in
2000.
Vision-Enhancing Implantable
Telescope — The FDA has approved
the use of an implantable miniature
telescope (IMT) for enhancing the
central vision of people with endstage, untreatable age-related macular
degeneration (AMD). The IMT provides
improved central and detailed vision
Winter 2013
Age-Related Macular Degeneration
by focusing and magnifying images
onto the functional, outer regions of the
recipient’s retina. People with advanced
AMD normally experience degeneration
of the macula or central region of
the retina. The IMT was developed by
VisionCare Ophthalmic Technologies.
Is AMD an inherited disease?
Researchers are discovering that
genetics appears to be a major factor
in more than half of AMD cases. Three
research groups have discovered a
gene called Complement Factor H (CFH)
that appears to be linked to at least 50
percent of all cases of AMD. Prior to this
landmark discovery, Foundation-funded
researchers discovered other genes
that appeared to be linked to AMD,
though these genes were implicated in
a smaller number of cases than CFH.
What are the risk factors for AMD?
The exact causes of AMD are not
completely understood. However,
genetics, diet, cigarette smoking, bright
sunlight, cardiovascular disease and
hypertension are risk factors for AMD.
www.FightBlindness.org
Winter 2013
RETINITIS PIGMENTOSA
What is retinitis pigmentosa?
Retinitis pigmentosa, also known as RP,
refers to a group of inherited diseases
causing retinal degeneration. The retina
lines the back inside wall of the eye
and is responsible for capturing images
from the visual field. People with RP
experience a gradual decline in their
vision because photoreceptor cells in
the retina die.
Forms of RP and related diseases
include Usher syndrome, Leber
congenital amaurosis, rod-cone disease,
Bardet-Biedl syndrome and Refsum
disease, among others.
however, first experience decreased
central vision and reduced ability to
discriminate color.
RP is typically diagnosed in adolescents
and young adults. It is a progressive
disorder. The rate of progression and
degree of visual loss varies from person
to person. Most people with RP are
legally blind by age 40, with a central
visual field of less than 20 degrees in
diameter. It is a genetic disorder and,
therefore, is almost always inherited.
What are the symptoms?
Symptoms depend on whether rods
or cones are initially involved. In
most forms of RP, rods are affected
first. Because rods are concentrated
in the outer portions of the retina
and are triggered by dim light, their
degeneration affects peripheral
and night vision. When the disease
progresses and cones become affected,
color perception and central vision are
diminished.
How is RP inherited?
An estimated 100,000 people in the
U.S. have RP, mainly caused by gene
mutations (variations) inherited
from one or both parents. Mutated
genes give the wrong instructions to
photoreceptor cells, telling them to
make an incorrect protein, or too little
or too much protein. (Cells need the
proper amount of particular proteins
in order to function properly.) Many
different gene mutations exist in RP.
In Usher syndrome, for example, at least
14 disease-causing genes have been
identified.
Night blindness is one of the earliest
and most frequent symptoms of RP.
People with mainly cone degeneration,
Genetic mutations can be passed from
parent to offspring through one of three
genetic inheritance patterns —
www.FightBlindness.org
Winter 2013
Retinitis Pigmentosa
autosomal recessive, autosomal
dominant, or X-linked.
In autosomal recessive RP, both
parents carry one copy of the
mutated gene but have no symptoms
themselves. Children have a 25 percent
chance of being affected by inheriting a
mutated copy from each parent.
In autosomal dominant RP, usually
one parent is affected and is the only
parent with a mutated gene. A child has
a 50 percent chance of being affected
by inheriting the mutated gene from
that parent.
In families with X-linked RP, the mother
carries the mutated gene, and all of her
sons are affected. Daughters are carriers
and aren’t usually affected. However,
some daughters are affected, but with
milder symptoms.
disorder from parent to offspring. It
also helps with attaining an accurate
diagnosis. A patient with an accurate
diagnosis is in a better position to
keep track of new findings, research
developments, and treatment
approaches. Genetic testing
information is available at www.
FightBlindness.org.
Extensive information
on RP research and
clinical trials of RP
treatments, as well as
low vision resources, are
available at
www.FightBlindness.org
If a family member is diagnosed with
RP, it is strongly advised that other
members of the family also have an eye
exam by a physician who is specially
trained to detect and treat retinal
degenerative disorders. Discussing
inheritance patterns and family
planning with a genetic counselor can
also be useful.
What testing is available?
Genetic testing is available for RP. It
helps assess the risk of passing the
www.FightBlindness.org
Winter 2013
USHER SYNDROME
What is Usher syndrome?
Usher syndrome is an inherited
condition characterized by hearing
impairment and progressive vision
loss. The vision loss is due to retinitis
pigmentosa (RP), a degenerative
condition of the retina, and usually
appears during adolescence or
early adulthood. Balance may also
be affected. Symptoms and disease
progression vary from person to person.
There are at least three different forms
of Usher syndrome. People with Usher
syndrome type 1 (USH1) are usually
born with severe hearing loss and
experience problems with balance.
The first signs of RP — night blindness
and loss of peripheral vision — usually
appear in early adolescence.
In Usher syndrome type 2 (USH2),
newborns have moderate to severe
hearing impairment. Symptoms of RP
typically start shortly after adolescence.
Visual problems progress less rapidly
than in Usher type 1, and hearing loss
usually remains stable.
A rarer third type of Usher syndrome
(USH3) was documented in 1995.
Children with USH3 are usually born
www.FightBlindness.org
with good or only mild impairment of
hearing. Their hearing and vision loss is
progressive, starting around puberty.
Balance may also be affected.
Hearing loss in Usher syndrome is
due to a genetic mutation affecting
nerve cells in the cochlea, a soundtransmitting structure of the inner
ear. The same genetic defect also
adversely affects photoreceptor cells
in the retina, leading to vision loss.
The retina is a delicate tissue in the
back of the eye composed of lightsensing photoreceptor cells. These
cells — also known as rods and cones
— are responsible for converting light
into electrical impulses that transfer
messages to the brain.
How is Usher syndrome
inherited?
Usher syndrome is passed from parents
to their offspring through an autosomal
recessive inheritance pattern. In this
type of inheritance, two copies of a
mutated gene, one from each parent,
are required for the child to be affected.
A person with only one copy of the
gene is a “carrier” and rarely has any
symptoms.
Winter 2013
Usher Syndrome
Researchers estimate that as many as
50,000 people in the U.S. have Usher
syndrome. Worldwide, it is the leading
cause of combined deafness and
blindness. Approximately 30 percent of
people with RP report some degree of
hearing loss, and about half of them are
diagnosed with Usher syndrome.
Genetic testing is available to help
people define their condition and the
risk of other family members or future
offspring being affected. Genetic
counselors are excellent resources
for discussing inheritability, family
planning, genetic testing and other
related issues.
What treatments are available?
While there are no treatments for
Usher syndrome, intensive research is
underway to discover the causes of, and
treatments for, all types of the disease.
Researchers have found numerous
genetic variations causing Usher
syndrome, allowing for the designation
of a variety of subtypes (i.e., 1A, 1B, IC,
1D, 1E, 1F, 1G, 2A, 2B, 2C and 3A). Gene
therapy to replace defective Usher
genes is being studied in preclinical
settings.
Researchers have also identified a
nutritional therapy to slow the rate
of vision loss in some RP patients.
Although not a cure, they found that
www.FightBlindness.org
vitamin A palmitate can slow retinal
degeneration in some people with RP
and Usher syndrome type 2. They also
showed that docosahexaenoic acid
(DHA) — an omega-3 fatty acid —
can enhance the effect of vitamin A.
However, the enhanced benefit of DHA
was realized only during the first two
years of vitamin A therapy. (Only adult
RP and USH2 patients were studied, so
the effect in other patients with Ushers
Syndrome is not known.)
In addition to nutritional therapies,
researchers are working toward a
variety of potential treatments for Usher
syndrome, including artificial retinal
implants, gene therapy and stem cell
treatments.
For more information on research and
clinical trials for Usher syndrome, refer
to the Foundation publication Usher
Syndrome: Research Advances.
Are there any related diseases?
Other conditions, some of which are
also inherited, can result in deafness
and deaf-blindness, but are not related
to Usher syndrome. However, the RP
associated with Usher syndrome shares
most of its characteristics with other
forms of RP. Researchers expect that
advances in understanding and treating
other forms of RP will directly benefit
people with Usher syndrome, and vice
versa.
Winter 2013