Resources

Below you can find different resources that I have found helpful. This list will be updated with each new recommendable resource that I find. Please comment below if there is a resource that you have found helpful that I have not listed here!

All resources are listed alphabetically by subject and are underneath two different headings: THE FACTS, SUPPORT, ROLE MODELS.

 

THE FACTS: Here you will find websites that will tell you the scientific facts of Retinitis Pigmentosa and Usher Syndrome. A lot of these websites also have support systems linked in their websites but to make things simpler to find, I’ve moved those links to the ‘SUPPORT’ section of this page, so keeping scrolling for the support links!

Retinitis Pigmentosa:

Foundation for Fighting Blindness: Foundation for Fighting Blindness is an organization that works to raise awareness for eye diseases that cause blindness, such as macular edema, glaucoma, and retinitis Pigmentosa. You can find more information on Retinitis Pigmentosa on their website here.

National Eye Institute (NEI): The National Eye Institute is a part of the National Institute of Health. They have lots of different research surrounding the Retinitis Pigmentosa. You can find more about Retinitis Pigmentosa on their website. They also have more links to other scientific sources on the bottom of the page.

Usher Syndrome:

Usher Syndrome Coalition: Usher Syndrome Coalition is a group that strives to raise both awareness and research for Usher Syndrome. They also have personal posts written by people with Usher Syndrome or family or friends with Usher Syndrome. More is included about Usher Syndrome Coalition in my Own the Equinox post.

Foundation for Fighting Blindness: Foundation for Fighting Blindness is an organization that works to raise awareness for eye diseases that cause blindness including Usher Syndrome. You can find more information about Usher Syndrome here.

National Eye Institute (NEI): The National Eye Institute, a part of the National Institute of Health. They have lost of different research programs surrounding Usher Syndrome.

National Institute of Health (NIH): The National Institute of Health has lots of resources on Usher Syndrome as well as research programs for Usher Syndrome.

 

SUPPORT: Support is so important! These sites are different organizations that offer peer support for vision loss, hearing loss, or both, which is what makes them so vital.

VISION & HEARING LOSS:

Usher Syndrome Coalition: Usher Syndrome Coalition has both a blog where you can read experiences other people either who have Usher Syndrome or friends or family of someone with Usher Syndrome as well as online community, called the USH Blue Book, built for people with Usher Syndrome. These are especially popular to post during Own the Equinox, a month long event where Usher Syndrome Coalition encourages people to raise awareness on Usher Syndrome. (For more information you can visit my blog post on Own the Equinox or visit Usher Syndrome Coalition’s page on Own the Equinox). Please Note: I encourage everyone to read the Ush Blog  to learn more about what it is like for people with Usher Syndrome, but the USH Blue Book is for people with Usher Syndrome and/or family who need support. Please respect this.

Helen Keller National Center: The Helen Keller National Center is the only national center in the United States that specifically works to educate the deafblind in learning braille, ASL, tactile sign language, mobility and orientation training, assistive technologies, and more. You can view the success stories here. If you are someone with vision and hearing loss looking for more information to apply to the Helen Keller National Center, you can visit this link to their contact page and find the closest regional center.

 

ROLE MODELS: When I was growing up, I was the only one with a hearing loss in my school and one of two in my school district for the majority of my school life. I was constantly looking for role models that I could look to and could not find that many. Then when I found out about my vision loss, this search became even more crucial. This is why I have added a section dedicated to role models on the resources page. Here you will find different role models that I have found that either have vision, hearing loss, both, or other struggles that I have identified with.

Molly Burke: Molly Burke is a motivational speaker who shares her personal stories of losing her vision at age fourteen to Retinitis Pigmentosa, being bullied, and her struggles with depression and anxiety. On her YouTube Channel, she shares not only her personal stories but also misconceptions of people with vision loss and guide dogs and living with vision loss as well as talking about her love of fashion and using environmental friendly products. I really like her channel because while she does not sugar coat things, she also knows how to share about the scary process of losing your vision without being caviler about it, which helped me a lot when I first started watching her videos.

Her videos that explain her vision loss: Living with Retinitis Pigmentosa, RP Update & What I REALLY See!

Her video playlists about her vision loss (in this video playlist, she talks about how being blind has affected her self-esteem, dating, doing her makeup, and using her technology as a blind person): All Things Blind!

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