Friday Friends
Spotlight on Danay Trest
Part II: “Making a Difference” 

I try to bring awareness to everyone, starting with those closest to me.
I try to bring awareness to everyone, starting with those closest to me.

Welcome back to the Part 2 of Danay’s guest post. Hope you enjoy it! Don’t forget to leave a comment to encourage her in her campaign to bring awareness to Usher’s Syndrome!

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Hello again, Danay here. So glad you have tuned in for Part 2 of my guest post with Amy.

Since march 2015, when I began sharing my personal video, I’ve become much more open in discussing and sharing information about Usher’s Syndrome(USH).

Some steps I’ve taken toward adjusting and preparing for my future

  • I’ve since given up driving and have started using a mobility cane out in public.
  • I’m learning American Sign Language (ASL) and then transitioning to tactile signing for another avenue of communicating with people.
  • I’m also working on a couple of fundraising campaigns to raise money towards accelerating research and also to continue to raise awareness about Usher Syndrome.
Using my mobility cane for the first time in public, March 2015
Using my mobility cane for the first time in public, March 2015

My plans to GET INVOLVED, to raise awareness and find a cure for USH.
I CAN make a difference!

Planning a Country Western Festival

I enjoy country music very much and listen to it while I’m outside gardening, working in my yard or when I’m outside period.

My ultimate goal is to have the first ever #ideafblind country music festival as an USH fundraiser

So far, though, I haven’t found any country artists from the Internet who have contributed to eye disease awareness.The search is still on full steam ahead!

Another way I’m raising awareness is sharing and/or providing a pair of RP simulators I purchased from lowvisionsimulators.comThe simulators help others  to better understand the limitations brought on by visual impairments, such as tunnel vision.

low vision simulators
low vision simulators

I encourage them to look through the goggles, starting at about five minutes per day – doing everyday tasks,  going through their mail or whatever they do and build up to about 30 minutes to get a really clear understanding of my environment.

I started with family and friends but now also pass them along to those I’ve become friends with through my Usher’s Syndrome challenge Facebook page and support groups via Facebook as well which has been a tremendous help! I sent a pair of goggles to Amy to use in educating the public as well.  I find it a very good tool for educating others about the challenges of vision loss that I live with every day. The number one response I hear back is, “I don’t know how you do it!” They are a very useful tool!

Newest Project

I am actively involved with an organization called Usher Syndrome Coalition I was fortunate to have been asked to take part in a media campaign entitled, “USH on Capitol Hill” to bring awareness to this little-known disease (only 1 in 50,000 people have it).  You can see me speaking with a local newscaster in our media release / publicity campaign. USH Campaign on Capital Hill 

You may learn more about Usher Syndrome Coalition by visiting www.usher-syndrome.org.

Future Plans

I have plans to have a local live story on my Take5Another5 challenge and will post it on my Usher Syndrome Challenge page for viewing when it becomes available.

While spreading awareness is my newest endeavor in life, taking time and caring for myself and living my life to the fullest is a MUST as is reminding myself daily that I’m not alone!

God blesses us all no matter what and I’m very thankful for the life I have and to those whom share this life with me.

My sister and Mom both live out West. I don’t get to see them often but we’re phone call away and I know I can count on them if/when needed. I’m blessed with three beautiful children ~ Stephanie, Cory and Jamie.

My three kids: Stephanie, Corey
My three kids: Stephanie, Corey and Jamie

My husband Gil is my best friend, my rock in life. He’s been beside me through all the good and bad, happiness and sadness, health and sickness and we are stronger than ever before. He’s a GODsend to me and I will forever be grateful and can’t thank him enough for ALL that he has done for and with me.

My biggest daily challenge in life is going deaf/blind.

We all face all sorts of challenges in life. They come and go like friends do. No matter what your challenge(s) are or what you may be faced with during your life, I remind myself of the following phrases: “Let it go”, “Stay strong”, “You’re not alone”, “Faith-PRAY-Believe”, “Take time for YOU!”

Which one of Danay’s final phrases do you most identify with? Do you have any of your own to add in overcoming challenges? 

 

                                BIO

Danay Trest - Advocate for those with Usher's Syndrome
Danay Trest – Advocate for those with Usher’s Syndrome.

 Danay Trest lives in Brandon, MS with her husband, Gil, and her four dogs – Layla, Bella, Heidi, and Sadie. She enjoys gardening and walking on the beach. A retired business administrator, she  was dedicated to serving others with her skills in the Emergency Department  at the University of MS Medical Center, Jackson, Mississippi for 13 years. She is also  a breast cancer survivor. Danay continues to be challenged by Usher’s Syndrome, the leading cause of deaf / blindness in the world. She  wants the world to know what USH is. She says, “I’m challenged daily from sun up till sun down. To date, there is no cure. Going deaf/blind ain’t easy!”

You have just read “Friday Friends: Spotlight on Danay Trest” by Danay Trest and Amy L. Bovaird. Copyright May 8, 2015. Please share Danay’s personal breakthrough video to raise awareness of the challenges of Usher’s Syndrome. And, oh yes, please leave a comment! Thanks!

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8 thoughts on “Friday Friends: Spotlight on Danay Trest

  • May 9, 2015 at 4:16 pm
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    Thank you, Carol.
    Appreciate both your comment and encouragement.
    Amy

  • May 11, 2015 at 12:25 am
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    It’s a long road to raise awareness. I have a brother in law who is developmentally disabled, and trying to advocate for him can be – trying. Those low vision goggles sound like a great tool for raising awareness. I’ve even heard of a simulator that can bring a person into the world of someone with Alzheimers. Going through a “test drive” of a disability is a priceless teaching tool. May you experience success with your goals.

  • May 11, 2015 at 1:28 am
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    Hi Alana,
    Less than 50,000 people have Usher’s Syndrome in the US. As Danay said, it’s the leading cause of deaf blindness — and she and I both have it. Raising awareness is critical as is finding a cure when you are facing such challenges! The good news is getting funding can speed the process and you never know what is going to lead to a cure! The goggles are great. I use them in my talks. I love what is available today to make other people aware. It’s such a comfort!
    Amy

  • May 12, 2015 at 6:34 pm
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    so good to read others life with USH.. its a kind of supporting and sharing tips for all. the support each has from friends and family is the most important.

  • May 12, 2015 at 9:45 pm
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    Nice comment! I have Usher’s syndrome type 1, and my great nephew and niece have Usher’s syndrome too.

  • May 13, 2015 at 10:32 am
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    Dear Marla,
    You are so right! The support and sharing tips with others is helpful and encouraging. Thank you for stopping by and reading about my friend, Danay. During the week I share my own experiences and every Friday I feature a new inspiring guest. Please visit me again!
    Amy

  • May 13, 2015 at 10:36 am
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    Hi Debra,
    Welcome to my site! So glad that you stopped by to read Danay’s story of encouragement! Every Friday I have a special guest and during the week I post about my own experiences. Please visit again.
    AMy

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