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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 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 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