Usher Syndrome Awareness Day 

“I’m not invisible!” 

Karen Duke, a member of my Usher Syndrome support group
Though Karen Duke is active in many groups, her hometown organization is the Usher Syndrome Coalition of Utah.  

35-Day Blogging Challenge – Day 7

September 19, 2015 is the first global Usher Syndrome Awareness Day. People around the world are responding to bring awareness to this rare hereditary disease.

I thought I’d share a little bit about what is trending on personal pages and Support Groups on Facebook. 

The plans for today’s global vigil started with the Usher Syndrome Coalition. I love the reason they selected today to mark and publicize it. Read about the symbolic reason here. 

Peter Devlin holding a candle - Ushser Synddrome Support Group of America
Peter Devlin holds a candle – Usher Syndrome (of America) Support Group

He posts the following:
“Candles in the wind, may you shine a light on our darkness.
Show us through the twilight, lead us through the keyhole.
May we see the stars once again, may we adore the sound of music and laughter among people too. On Usher Syndrome Day, we will not be invisible again.”

Mexico is also honoring Usher Syndrome Awareness Day. 

This is for my Spanish-speaking friends
This is for my Spanish-speaking friends

In Mississippi, Danay Trest is doing her part to bring awareness. She works hard to secure funding from Congress in order to research a cure. From her page: Usher Syndrome Challenge, she shares: Mississippi recognizes the first ever “Usher Syndrome Awareness Day.” My utmost gratitude to Governor Phil Bryant and his wonderful staff for helping make this possible. This is and will forever be a memorable event I will treasure today and always to spread the awareness of Usher Syndrome in my home state of Mississippi as well as around the world. I’m honored to share in my hands, possession of the original sealed and signed proclamation from Governor Bryant. This news I share with you all is how I ‘Own the Equinox’ ‪#‎USHEQX‬

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Danny Trest shows an official letter from the government of Mississippi officially recognizing Usher Syndrome Awareness Day.
Danay Trest shows a letter from the government of Mississippi officially recognizing Usher Syndrome Awareness Day.

My colleague, Leslie Thompson, announces it on her page and shares how her family contributed to bringing awareness, “Today is the first ever Usher Syndrome Awareness Day! People all over the world are working hard to raise funds for research and raise awareness of this disease. Well it took A LOT of encouragement to get my kids out but we got in a mile through the field. Thank you to all those who have supported me since I opened up about my vision struggles. Don’t let the sun go down on USH!”

Usher Own the Equinox

There are many standing with us today. Dave Steele, losing his vision from RP, stands firm the UK. He has rallied behind us with a hashtag movement:  #StandbyMeRP and #RPLikeMe.  Dave is a prolific poet and singer who speaks out for change on his page: RP Stand By MeHe shares a link to another advocate, Ramona Rice, who, on top of everything else, is involved in compiling a book with stories penned by those who suffer from Usher Syndrome. This is a link to Ramona’s thoughts on today. 

This article (link at the end of the paragraph) serves as an excellent resource to gain a little bit of knowledge about Usher Syndrome. It features Molly Watt, a twenty-year- old motivational speaker, author and advocate for change. Read it HERE.

I, too, lend my voice in solidarity with these tireless advocates to gain awareness of this rare hereditary disease–400,000 worldwide. In 2009, we followed up with my suspicion of hearing loss. The specialist confirmed I had moderate hearing loss, which he attributed to Usher Syndrome. (It’s now moderate to severe). It’s been a struggle to come to terms with it. I guess we’re all works in progress. 

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Thank you for joining me today and letting me share a little bit about this special day as we take strides to latch onto a more hopeful future and to find a cure. 

What groups or events do you lend your voice to? Are you involved in a cause you care about deeply? 

 

You have just read “Usher Syndrome Awareness Day” by Amy L. Bovaird. Copyright September 19, 2015. Don’t forget to leave a comment or share my post! 

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2 thoughts on “Usher Syndrome Awareness Day

  • September 20, 2015 at 1:33 am
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    What a great idea, Amy, to share all these posts in one place. I have seen none of them–including yours, which should show in my feed. 🙂

  • September 20, 2015 at 12:36 pm
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    Thank you, Laura! I’m so glad that Facebook unites so many with Usher’s and that we can encourage each other.
    As you have encouraged me by reading and commenting on my post. 🙂

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