For Patients and Families

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For Patients & Families

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Because we all need each other. CRF bridges the divide between
researchers and patients because we’re in this fight together.

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Join the CHM Registry

Join the CHM Patient Registry by clicking on your preferred language:
→   English / French / German / Portuguese / Spanish
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What is the CHM Registry?
The Registry is a collection of names and basic contact information of people around the world who have CHM.

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Why Should I Join?

• Individuals who register will receive updates on new clinical trials and other research opportunities.
• Enable the collection and sharing of information from a large number of patients within the research community.
• Opportunity to participate in “Patient Preference and Experience” surveys.
• Improves chances of drug development.

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How Long will Sign-up Take?
Less than 5 minutes!

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Will My Information be Shared?
All of the information provided will be treated as confidential and that under no circumstance will personal information will be shared with any other source, or third party.

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Find a Doctor

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Are you looking for a retina specialist?

The American Society of Retinal Specialists provides a physician locator to help you find a retina specialist.

[/fusion_text][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”default” rule_size=”” rule_color=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” margin_top=”65px” margin_right=”” margin_bottom=”0px” margin_left=”” font_size=”” fusion_font_family_text_font=”” fusion_font_variant_text_font=”” line_height=”” letter_spacing=”” text_color=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]

Genetic Testing

[/fusion_text][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”” rule_size=”” rule_color=”” hue=”” saturation=”” lightness=”” alpha=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” margin_top=”” margin_right=”” margin_bottom=”” margin_left=”” fusion_font_family_text_font=”” fusion_font_variant_text_font=”” font_size=”” line_height=”” letter_spacing=”” text_transform=”” text_color=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Anyone with an inherited retinal disease (IRD) should consider genetic testing. Genetic testing may be able to identify the mutated gene or genes, as well as the contributing genetic variants responsible for your vision loss. Armed with this important information, you and your doctor can determine the best course of action for your disease and discuss whether clinical research might apply to you.

If you were tested a few years ago and you didn’t receive a conclusive result—or received a negative one—think about getting tested again.  Genetic tests have improved, more details about your specific genetic variations or mutations may be revealed, research is advancing, and a person may learn more from a newer test.

When you identify and understand the gene mutations responsible for vision loss, you may open new possibilities for yourself and your family.  There are more than 300 genes known to cause IRDs, and further, more than 300 different variants that can cause CHM. The availability of genetic testing has opened doors and brought information and clarity to many living with one of these rare eye diseases.[/fusion_text][fusion_youtube id=”https://www.youtube.com/watch?v=qZP13FIIRPg” alignment=”left” width=”450″ height=”” autoplay=”false” api_params=”” title_attribute=”” video_facade=”” margin_top=”” margin_bottom=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” css_id=”” structured_data=”off” video_upload_date=”” video_duration=”” video_title=”” video_desc=”” /][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”” rule_size=”” rule_color=”” hue=”” saturation=”” lightness=”” alpha=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” margin_top=”” margin_right=”” margin_bottom=”” margin_left=”” fusion_font_family_text_font=”” fusion_font_variant_text_font=”” font_size=”” line_height=”” letter_spacing=”” text_transform=”” text_color=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]

The future will hold gene and variant specific therapies, and as new potential treatments become available, details about these clinical trials will be posted on ClinicalTrials.gov, a resource with information on international clinical studies throughout the US and beyond. The more patients and the medical community know about specific gene mutations and variants, the faster clinical trials may progress. Because of this, everyone with an IRD or suspected IRD should pursue genetic testing.

Because of this, everyone with an IRD or suspected IRD should pursue genetic testing.

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Free Genetic Testing – Your Options

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Research begins with recognition. In rare diseases, the journey toward a cure often starts with accurate diagnoses. So, we work hard to build awareness among physicians to ensure genetic testing and an accurate diagnosis for the CHM patients they treat.

My Retina Tracker

The Foundation Fighting Blindness offers a best-in-class genetic testing program that enables any eye care professional in the US to order no-cost genetic testing through the Foundation’s My Retina Tracker Genetic Testing Program and genetic counseling for patients clinically diagnosed with an inherited retinal disease including choroideremia.

The partnership includes genetic testing provided by PreventionGenetics, which utilizes a state-of-the-art genetic testing panel for IRDs, and genetic counseling from InformedDNA, which are experts in helping patients understand what the test results mean for them and their families.

Also, patients can upload information about their condition to the My Retina Tracker Registry to get on the radar screen of researchers and therapy developers around the world, including those recruiting for clinical trials for emerging therapies.

Learn details about the Foundation’s My Retina Tracker Genetic Testing Program and Patient Registry

Genetic Testing Outside the U.S.

Please note at the present time, the My Retina Tracker program is only available in the United States. Click here to visit the National Center for Biotechnology Information’s website and view a comprehensive list of companies worldwide which offer genetic testing for choroideremia.

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CRF Membership

The Choroideremia Research Foundation is a member-based organization. Membership is open to any interested person. Membership is by household and covers all adult (18+) members of your household.

Please join us today – we will keep you informed of recent updates in research and other news related to CHM. Information shared with us is confidential.

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CRF Membership Levels

FREE Membership: Benefits include: membership voting privileges; weekly e-newsletters and annual report (mail or email option). Become a FREE Member by clicking here.

Standard Membership (requires annual renewal): membership is $60 annually and benefits include: membership voting privileges; contact call; weekly e-newsletters and annual report (mail or email option); and 25% off merchandise and conference. Become a Standard Member by clicking here.

Standard Membership (automatic renewal): membership is $5 a month and membership automatically renews on a month-to-month basis. Benefits include: membership voting privileges; contact call; weekly e-newsletters and annual report (mail or email option); and 25% off merchandise and conference. Become a Recurring Standard Member by clicking here.

Lifetime Membership*: membership is a one-time cost of $600. Benefits include: membership voting privileges; annual contact call; weekly e-newsletters and annual report (mail or email option); one time recognition in CRF’s annual report; 25% off merchandise and conference; invitation to networking events such as researcher receptions** at conferences. Become a Lifetime Member by clicking here.

* Existing Lifetime Members will receive the new benefits of that level & require no further action.
** Individuals may also qualify to attend Networking Events by serving as a volunteer with, or fundraiser for, CRF.

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Patient & Family Support

Something incredible happens when CHMers and their families get to meet. They find “their people:” Those who understand, in a world that often doesn’t. They share experiences and resources. A laugh. Big and small moments that remind them, most of all, that they are not alone.

CRF offers a variety of ongoing opportunities to socialize online with your fellow CHM family members via Zoom. Regularly scheduled events include:

• Music Trivia
• Sports Trivia
• Beer Appreciation Club
• Book Club
• Moms of CHMers Chats
• CHMer Convos
• Holiday Parties
• … and more.

Please view our upcoming calendar of events on Facebook at: https://www.facebook.com/CureCHM/events or email Cory MacDonald for more information.

Facebook Groups

Choroideremia (CHM) https://www.facebook.com/groups/Choroideremia/

Choroideremia CHM for Understanding (International) https://www.facebook.com/groups/1388456481446308/?ref=bookmarks

Choroideremia Norway https://www.facebook.com/CHMNorthNorway/

Leben mit Choroideremia (German) https://www.facebook.com/groups/606431343168032/about/

Choroideremia Research Foundation Canada https://www.facebook.com/crfcanada/

Choroideremia Greece https://www.facebook.com/greecesopranochoroideremia.greece

UK Choroideremia Friends and Support https://www.facebook.com/groups/322013511944104

Coroideremia (Portugese) https://www.facebook.com/Coroideremia-164001050760710/

Asociación de Afectados por la COROIDEREMIA (Spanish) https://www.facebook.com/coroideremia/

CHM Moms for Each Other https://www.facebook.com/groups/334819910042088/

Spouses of Choroideremia https://www.facebook.com/groups/784934478268986/

Remember the Girls https://www.facebook.com/groups/rtgclosed
This group aims to break the stigma facing females impacted by X-linked conditions by providing them with tools to seek support, engage with research, and access family planning options, as well as by advocating for increased attention of medical professionals to the physical, emotional, and reproductive needs of this community.

WhatsApp / X/Twitter / Instagram

Join the conversation on X/Twitter, and on Instagram. Interested in joining our WhatsApp Group? Email Cory MacDonald at email hidden; JavaScript is required for a secure invite link!

YouTube

Over 225 videos have been posted to CRF’s YouTube channel, https://www.youtube.com/curechm, with information on everything from guide dogs, to assistive technology, emotional/social support and education, interviews with other patients, family members and researchers, science updates, and much, much more!

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Patient Toolkit

Living with CHM’s progressive vision loss brings with it challenges that can be mitigated or lessened by adopting basic lifestyle changes. Below are some tips regarding choroideremia eye health and daily living that have been assembled by medical professionals and fellow CHMers:

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The CRF spoke to several eye doctors and asked for their input on supplements for CHMers. Please note, there is no clinical evidence that any of these supplements help CHM specifically. However, there is evidence these supplements may help the overall health of the eye.

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Here are some general eye health nutrition tips from the Casey Eye Institute Ophthalmic Genetics Clinic:

1. Eat vegetables and fruits which are high in lutein and zeaxanthin: There is some evidence that a diet that is rich in lutein and zeaxanthin may help protect the macula from oxidative damage by contributing to a layer of healthy macular pigments. Since the macula is the area of the retina that provides your best vision, it is probably wise to enrich your diet with foods that are high in these substances. These are generally healthy fruits and vegetables (including peppers, lettuce, asparagus, corn, broccoli, spinach, fresh collar greens, swiss chard, kelp, and kale) that may also reduce the risks of heart disease and cancers. Because lutein and zeaxanthin are only two of over 600 plant carotenoids, many of which may also be healthy, we recommend eating foods that are high in these compounds rather than capsule supplementation with lutein and zeaxanthin compounds alone. It’s recommend to consume 15,000 micrograms of lutein per day from dietary sources.

2. Eat fish: The omega-3 fatty acids found in dark fish may help slow the loss of vision. PLEASE NOTE: The FDA has confirmed that fish is an important part of a healthy diet, but has recently recommended that women who might become pregnant, women who are pregnant, nursing mothers and young children avoid certain types of fish that may contain higher amounts of mercury. These fish include shark, swordfish, king mackerel and tilefish. The FDA encourages this group of people to avoid these fish with higher mercury content and, instead, to eat up to 12 ounces a week of fish that are lower in mercury, which includes canned light tuna, salmon, pollock and shrimp. Albacore and steak tuna have more mercury than canned light tuna and so should not be eaten more than once a week. The FDA also encourages people to check with local health advisories regarding fish caught by family and friends, and to limit consumption of that fish to once per week if local advisories are unavailable.
3. Quit smoking: If you smoke, now is the time to stop because cigarette smoke is a strong risk factor for developing macular disease and making retinal disease worse. If you are unable to stop smoking on your own, your physician, the American Lung Association, or the American Cancer Society may be able to help. Cigarette smokers should avoid taking vitamins with beta-carotene since it increases the risk of lung cancer in smokers.

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Here are some important tips from fellow CHMers!

1. Annual Doctor Visit
   Every CHM patient should visit their eye doctor on an annual basis.
2. Wear Sunglasses
   Always whenever outdoors! All doctors recommend UV protection sunglasses for CHMers. Sunglasses protect against glare and damaging rays to retina cells. Wraparound sunglasses can also reduce reflective glare. (HINT- Keep sunglasses on until you step indoors, reducing the time to adjust to indoor lighting)
3. Wear a Cap or Hat
   The shade of the brim cuts down significantly on reflected glare. This is true for outside and indoor lighting.
4. Put Glare Behind You
   Reduce eye strain and increase your ability to see what is around you. Choose the seat facing away from the window, harnessing that glare to light up your friends’ faces versus seeing them as a silhouette.
5. Learn to Ask/Accept Help
   Being led through a restaurant, a dark venue or through crowds is both safer and reduces distress on those with you. Most people are happy to help. If help is offered but not needed, be gracious for their offer.
6. Use a Cane
   Using a cane or an ID Cane, visually alerts folks that you may not see them. It’s a matter of safety for them and for you. When traveling, it is always good to have a backup cane. A broken or lost cane may not be easily replaced, adversely effecting your trip.
7. Ask a CHMer
   The greatest resources available to help you in living with CHM are fellow CHMers from across the globe via email and CRF social media platforms! You don’t need to reinvent the wheel for coping with CHM. We can help! And if you have found a better way of coping with CHM, we all want to know!
8. Exercise & Lifestyle (PDF)
   Voluntary exercise preserves visual function and reduces inflammatory response in an adult mouse model of autosomal dominant retinitis pigmentosa

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The effects of CHM can cause challenges both at work and daily living. The good news is that there are growing technologies to help compensate for those challenges. Adaptive software for computers, and apps for smart phones and smart devices can greatly enhance your productivity and independence.

Computers/Tablets

CHMer computer and tablet challenges are incremental difficulties seeing/tracking the cursor, eyestrain from glare, and lack of contrast and readable font size, which can require screen readers. Solutions are available and vary greatly depending upon your computer operating system.

(Windows vs. Apple)

Windows does have some accessibility features but generally requires investing in the purchase of additional third-party accessibility software to customize the screen to your visual needs and screen readers. Those software systems include:

• • JAWS (Freedom Scientific)
  • MAGic (Freedom Scientific)
  • ZoomText (AiSquared)
  • Dragon (Nuance)

To connect with a Microsoft expert on Microsoft Office and Windows accessibility questions, dial:
1-800-936-5900. Available Monday to Friday from 6am to 10pm (PST) and Saturday to Sunday from 7am to 6pm (PST).

Apple is the accessibility leader with significant built-in features on laptops and iPads. Apple also has a dedicated help center to assist you with any product challenges. Their most useful accessibility features include:

• • Smart invert colors
  • Voiceover
  • Customizable fonts
  • Zoom
  • Accessibility shortcut key

To contact Apple Accessibility Support over the phone for iPhone, iPad, IWatch and MacBooks, dial:

• • United States: 1-877-204-3930
  • United Kingdom: 0800 107 6285
  • Australia: (61) 1-300-365-083
  • China mainland: 400-619-8141 (Mandarin only)

Low Vision Devices Intro: https://www.youtube.com/watch?v=rT-TUPO3CrM

Blindness Device Intro:  https://www.youtube.com/watch?v=vE17G0_IdGQ

Smartphones

Intro to Mobile Apps Webinar: https://www.youtube.com/watch?v=tS9Vqp2S1uk

2020 iPhone 11 Pro Max, iOS 13.5 Accessibility Features for Low-Vision: https://www.youtube.com/watch?v=6UoVmGjT1Ww

Smartphones have become a game changer for CHM low-vision users by bringing accessibility with you wherever you are. iPhone is the leader in smartphone accessibility (see above). However, there is an ever-growing market of third-party accessibility apps available for iPhones and other phone manufacturers.

Accessibility Apps

These apps can help in generally two ways: 1) connecting you to a sighted person via your camera to assist you or 2) using your phone and the app for assistance. All are available via your app store for free and purchase. Here are some of the most frequently apps used by CHMers:

Sighted Assistants

• • Be My Eyes Connects users to volunteers to assist you by seeing/describing things via your phone camera (FREE)
  • Aira Connects users to trained guides to assist you in seeing things via your phone camera or guiding you via GPS (Free for calls under 5 minutes… free in certain airports… paid subscription for longer use)
  • Lazarillo Guides users through their city and building environments with real-time voice messages and connects users with businesses through accessible online shopping and notification services

In-Phone Assistance

Apps that work within your phone. Some may require internet/Wi-Fi.

• • KNFBReader Reads documents aloud.
  • Seeing AI A free app that can function as a document reader, currency identifier, barcode scanner, light detector, short text reader, and a handwriting reader.
  • DocsToGo A handy app for documents and PDFs. It allows you to pinch out (i.e. zoom) to raise the font size and it will re-justify all the text to stay within the screen. Super handy for presentations.
  • NIGHT VISION Uses the phone camera with slide control to greatly increase available light in dark locations.

Flashlight

Many CHMers know the value of carrying a small pocket flashlight.

Smart Home Controllers

Google Home or Amazon Echo are examples of Wi-Fi speakers that double as smart home control hubs and personal assistants. These devices can be programmed to sync with other compatible devices to turn lights on and off, adjust the thermostat, lock doors, make coffee, play music, read the news and weather, dispense measured amounts of water from a faucet, control a television and a wide variety of other tasks by voice command. Multiple devices can be installed in various rooms to provide voice-activated services throughout the home.

Wearable Devices

Ray-Ban Meta AI Glasses

For more information on the future of wearable assistive technology, please view the following webinar:
Sensory Augmentation: A ‘Tango’ with Advanced Wearables and Microservices, John-Ross Rizzo, MD.

https://www.youtube.com/watch?v=0CUL1SVL1lE

Adaptive Technology Podcasts

• Double Tap
• Access Tech Live
• Shawn of the Shed
• Apple vis (about iOS & Apple tech)
• Living Blindfully
• The Eye on the Cure from FFB
• Freedom Scientific Training (intended for accessibility trainers, but a good listen)
• Freedom Scientific FSCast, from the creators of JAWS
• Technically Working
• The Tech Doctor
• The Echo Tips (for those with Alexa or Echo devices)
• On Tech & Vision, hosted by the Lighthouse Guild
• TTJ Tech Talks

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A key part to maintaining independence when living with CHM‘s vision changes is in learning to adapt your environment, especially at home. Our primary challenges are in lighting and CONTRAST. Many solutions are simple changes. Others might require professionals. It will depend upon where your vision is now and in the future. Here are options that fellow CHMers have found useful.

Adjust the Lighting

• Add floor and table lamps around the living room, dining room, kitchen and bedroom. Clip-on lights can be placed strategically around the house.
• Use lighting that is 60–100 watts. Replace burnt-out bulbs regularly.
• Use adjustable blinds or sheer curtains to allow for natural light throughout the home.
• Experiment with lighting to find out which works best for your individual needs. There is halogen, fluorescent, incandescent or flood lighting. Note: fluorescent light bothers many visually impaired people.
• In case you need additional light at night, keep a flashlight or heavy-duty light on a keychain handy.
• Make sure light is uniform throughout your entire hallway to more easily identify where it curves or ends.

Kitchen Lighting

Well-lit work surfaces can make all the difference in the kitchen. Adding under cabinet LED lighting can make a huge difference. There are DIY kits or contact a professional electrician.

Kitchen of Contrast

In the Kitchen with CHM:  https://www.youtube.com/watch?v=nIFtPLtp7zs

Contrast is key in the kitchen. From the color of counter tops to the tools and the plates you use, contrast makes the difference in safety and use. Many of these are available online and locally:

• White and Dark Cutting Boards allow you to chop safely i.e. – white onions chopped on a dark cutting board.
• Knives/Tools Contrast is as simple as choosing tool colors opposite to the color of your counter tops making it easy and safe to find them.
• Large Print Measuring Cups are available in clear and colors that will allow for easy reading when measuring.
• Plates with Borders – White plates with wide color edges make a big difference for someone with low vision to be able to see not only where the plate is but what is on it.
• Avoid using clear glass dishes and cups – they are more difficult to see.

Rearrange the Furniture

Rearranging the furniture in your house can help you avoid injury and move around more easily. You can:

• Place mirrors strategically to avoid glare or reflecting light.
• Keep some chairs near the windows in case you want to read, work or craft in the natural light.
• Arrange furniture close together so that you can easily converse with others.
• When buying new furniture, try to pick upholstery with texture. This will help you more easily identify the different pieces of furniture.
• Place brightly colored vases or lamps near key items of furniture so that you can locate the furniture more easily.

Eliminate Safety Hazards

Feeling safe inside your own home is important. There are a number of things you can do to prevent falls and other injuries. You can:

• Keep desk and table chairs pushed in. Train your family to do the same. All of the time. No exceptions.
• Use non-skid, non-glare products to clean and polish your floors. Avoid waxing floors, which can make floors slippery.
• Remove low-lying coffee tables and end tables that might be trip hazards.
• Make sure electrical cords are removed from pathways or taped down securely so you won’t trip.
• Tape down any area rugs you have and replace any worn carpeting or floor covering.
• Keep all floors dry. Wipe up any spills immediately.
• Install grab bars or safety rails in high-slip areas like your bathroom or stairs.
• Mark step edges with yellow reflective tape so that you can easily identify them.
• Always keep your fire extinguisher and first aid kit in the same, easily accessible, place.
• Make sure all exits are marked with a bright, contrasting color in case of an emergency.
• Check smoke and fire alarms often. Ensure they are loud enough that you can hear them throughout the house.

Tactile Bump Dots

Controls on appliances can be visually hard to see with low vision. But a few strategically placed bump dots change that. Tactile bump dots are small self-adhesive dots that can be placed on appliances to tactilely indicate specific controls to touch or turn. Inexpensive dots come in clear and multiple colors and sizes. For example, putting a dot on a microwave number touch pad on the 1 minute and 30 second buttons allow you to easily set a time and operate the microwave.

Bump dots are great to travel with because you can mark your hotel door or the controls on the coffee pot.

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While formal blind rehabilitation training can take place at a variety of levels, locations, and varying stages of CHM, consider the following:

• What are the areas that you find more challenging?
• What aspects of daily life are most effected by your vision loss?
• What resources are in your community that can help reach your goals of added independence & safety prior to professional mobility or orientation? (Transportation, technology, adaptations to home/office, etc.)
• Professional Instruction: Cane Training; Adaptive Tools in Home, Assistive Technology; Computer/Phone adaptations; Guide Dogs and more….

Is a Guide Dog in Your Future?:  https://www.youtube.com/watch?v=_bVAzhgpQX8

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Choroideremia may limit some of your career options, but it doesn’t limit your opportunities for a very successful and prosperous life!

CRF supports career counseling from public or local advocacy organizations, however, the best advice often comes from others who have CHM. Please visit the Support section of this website for more information.

Today’s technology, as well as using different adaptations, allows people with vision loss to do just about any job you can think of. The following list, although not exhaustive, is meant to give a general idea of the different careers and jobs done by people who are blind or visually impaired:

• Teachers, college professors and guidance counselors
• Social workers and psychologists
• Doctors, nurses, and occupational and physical therapists
• Masseuses and chiropractors
• Rehabilitation teachers and counselors
• Customer service representatives
• Restaurant and store workers
• Factory workers
• Freelance writers, journalists and TV and radio broadcasters
• DJs and musicians
• Attorneys, judges, and politicians
• Executive directors and managers
• Coaches and athletes
• Authors and motivational speakers
• Chefs
• Architects
• Researchers, engineers, and scientists
• Artists and photographers

A resource for job seekers who are visually impaired:  Career Connect

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According to the report for the 2015 National Health Interview Survey, 23.7 million American Adults aged 18 and older reported experiencing vision loss. The Social Security Administration (SSA) considers “legal” or “statutory” blindness as a qualified disability. In fact, the blind can qualify for disability and continue to work while receiving monthly benefits, provided they meet all SSA requirements.

Disability benefits can provide financial support and access to occupational rehabilitation, in which workers are trained for new professions. Disability benefits can additionally be an ongoing source of financial support for blind workers, allowing them to continue employment while simultaneously receiving monthly disability payments.

To qualify for disability benefits, your vision loss or blindness must meet one of the following listings:

• Loss of central visual acuity (2.02) – this listing covers loss in your central field of vision and requires you see no better than 20/200 in your better eye.
• Contraction of the visual field in the better eye (2.03) – you can qualify under this listing if you have a shrinking field of vision. Your doctor must measure your vision with specific tests and must record what you’re able to see when you’re focusing on a fixed point. This listing requires reports of your visual field, which is the distance in all directions from the fixed point on which you’re focused. That diameter must be no greater than 20 to 30 degrees. In other words, your visual field must be very narrow.
• Loss of visual efficiency, or visual impairment (2.04) – this listing covers issues that cause blurry or unfocused vision or an absence of vision (total blindness). To qualify, you must have vision in your better eye that is no greater than 20/200 when wearing corrective lenses.

Working with Social Security and the Disability Division will take time & patience. Talking with your doctor and potentially a Social Security Attorney can help navigate these waters. One resource that may be helpful is the Disability Benefits Help website.

For more information on CHMer Rights under the Americans with Disabilities Act (ADA), please view this YouTube video or refer to this PowerPoint presentation.

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Living with CHM’s progressive vision loss not only affects daily routines and independence—it can also impact emotional well-being. Feelings of anxiety, frustration, sadness, and uncertainty are common and valid. Taking care of your mental health is just as important as managing physical changes.

Many CHMers have found that acknowledging these challenges and seeking support—whether through counseling, peer connection, mindfulness practices, or community groups—can help foster resilience and improve quality of life. Regular exercise, creative outlets, and staying socially connected are also helpful tools for managing emotional health.

You are not alone. It’s okay to ask for help—and there are resources available. Maintaining mental well-being is an ongoing process, and finding what works for you can make a real difference.

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Products & Services

Below are links to products that some of our members have found useful. This list is provided for informational purposes only. CRF does not endorse any of these products.

Eye Wear

Cocoons Eye Wear https://cocoonseyewear.com/cocoons-polarized-fitovers
OrCam Wearable Assistive Devices https://www.orcam.com/en/

Lighting

Berryessa Lighting Solutions https://www.berryessadesigns.com/about-us.html
Stella Lighting http://www.stellalighting.com/

Magnifiers

Eschenbach Filters & Magnifiers https://www.eschenbach.com/products/absorptive-filters.asp
Zoomax Technology Co., Limited  https://www.zoomax.com

Mobility

AmbuTech Canes https://ambutech.com/
Revolution Advantage Canes http://advantage-canes.com/
Free Canes https://www.nfb.org/programs-services/free-white-cane-program

Technology

Freedom Scientific Low Vision Products https://www.freedomscientific.com/products/lowvision/
Humanware Accessibility Software http://www.humanware.com/en-usa/home
Computers for the Blind https://www.computersfortheblind.org/
BARD Mobile Free Audio Books https://www.loc.gov/programs/national-library-service-for-the-blind-and-print-disabled/about-this-service/

Various Products

LS&S Products for the Visually Impaired https://www.lssproducts.com/
Optelec Low Vision Wearables and Daily Living Aids https://us.optelec.com/

Services

Council of State Administrators of Vocational Rehabilitation https://www.csavr.org/stateagencydirectory

International Resources

Retina International http://www.retina-international.org/our-members/
Choroideremia Research Foundation Canada https://curechm.ca/

Travel Assistance

Air Charity Network: http://aircharitynetwork.org/
Healthcare Hospitality: https://www.hhnetwork.org/about-us
Mercy Medical Angels: https://www.mercymedical.org/request-assistance
Air Flight East: https://angelflighteast.org/

Financial Resources

Guaranteed Rate Foundation: https://www.gr-foundation.org/
Modest Needs: https://www.modestneeds.org/for-applicants/
Vital Options: https://www.vitaloptions.org/grant-program

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Patient Stories & Videos

[/fusion_text][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”default” rule_size=”” rule_color=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” margin_top=”” margin_right=”” margin_bottom=”” margin_left=”” font_size=”” fusion_font_family_text_font=”” fusion_font_variant_text_font=”” line_height=”” letter_spacing=”” text_color=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]CHMer Mike McCarthy explains what it is like to live with choroideremia in the video below.[/fusion_text][fusion_youtube id=”8T9qHCqWBpc” alignment=”center” width=”950″ height=”” autoplay=”false” api_params=”” title_attribute=”” video_facade=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” css_id=”” /][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”default” rule_size=”” rule_color=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” margin_top=”4%” margin_right=”” margin_bottom=”” margin_left=”” font_size=”” fusion_font_family_text_font=”” fusion_font_variant_text_font=”” line_height=”” letter_spacing=”” text_color=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]

Here’s what the Choroideremia Research Foundation is doing to make a difference!

[/fusion_text][fusion_youtube id=”su5GPLl3S_k” alignment=”center” width=”950″ height=”” autoplay=”false” api_params=”” title_attribute=”” video_facade=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” css_id=”” /][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” flex_grow=”0″ top_margin=”10px” bottom_margin=”15px” width=”” alignment=”center” border_size=”” sep_color=”” icon=”” icon_size=”” icon_color=”” icon_circle=”” icon_circle_color=”” /][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”default” rule_size=”” rule_color=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” margin_top=”” margin_right=”” margin_bottom=”” margin_left=”” font_size=”” fusion_font_family_text_font=”” fusion_font_variant_text_font=”” line_height=”” letter_spacing=”” text_color=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]

Meet More CHMers

• Meet Mike Martens
• Meet Brian Counter
• Meet Neal Bench
• Meet Chris Moen
• Meet Sam Harding
• Meet Wayne Thompson
• Meet Kristin Ging
• Meet Tod Purvis
• Meet Justin Purvis
• Meet Ron and Danny Downs
• Meet Jan Laudenbach
• Meet Sebastian Joachim
• Meet Bob Hrdy

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