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When We Connect We Are Stronger

When We Connect collage of FFB photos are in the body of the post

When We Connect We Are Stronger

Three of Diane Krek's landscape paintings are on easels behind a banquet table with Chinese Auction and Silent Auction items. In front of each auction item is a pink or blue foil gift bag for the raffle tickets.
Diane Krek’s Paintings, “BLT Art For A Cause”

This past weekend the Pennsylvania Council of the Blind (PCB) was an exhibitor at the Pittsburgh Vision Seminar. The seminar, hosted by the Foundation Fighting Blindness (FFB) reminded me once again of how lonely sight loss can be. When we connect we are stronger because losing one’s eyesight can be a lonely experience but it can be different.

The first person I met was so upset over her sister’s sight loss to diabetic retinopathy I thought she might break down. When I asked her if her sister was given a referral to low vision rehabilitation I wasn’t surprised when she told me no. This conversation set the tone as we spoke with many people and family members of those new to sight loss.

It’s Helpful to Know You Aren’t Alone

While those attending these events are looking for a cure to their inherited retinal disease I think it’s equally important to adapt. For this reason, I am so glad several of the exhibitors were blind or visually impaired. This was an opportunity for a vital connection between sighted and non-sighted communities. My friend Diane Krek, who was recently featured in one of our local newspapers, was there with her beautiful paintings. Then there was my friend Christine and I who represented PCB.

When I lost my sight it was my friends at PCB and our local chapter who helped me get through it. So Saturday was my chance to give back by letting people see us in action. It’s so gratifying being in a position of helping people understand they are not alone in their sight loss journey and assure them that life goes on.

Giving people a few simple tools like 20/20 pens and check writing guides along with other resources enlightened them. Advising others of our local PCB affiliate in Pittsburgh gave them the opportunity to join our peer network.

Gene Therapy & Latest News

While I couldn’t stay for the entire seminar, the speakers I heard were awesome. Dr. Leah Byrne, Assistant Professor, Department of Ophthalmology, University of Pittsburgh and Ben Shaberman, Senior Director of Communications, FFB shed light on the latest research. Another interesting tidbit of information was the My Retina Tracker Registry. The voluntary registry is designed to help accelerate the discovery of treatments and cures for those with inherited retinal diseases.

When We connect Featured Image Description:

A photo collage of images from the event. Left to right, the first photo is a blue and white FFB vertical banner. The only text I can read is Foundation Fighting Blindness and their website address. The second photo (top right) is the jam-packed hotel meeting room filled with people sitting at round tables. There is a big screen at the far right of the room where they shared a PowerPoint presentation. The third photo is the FFB registration table just outside if the meeting room.

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WOTM 34 Featuring Mara Lauren

WOTM 34 Featured image description is in the body of the post

WOTM 34 Featuring Mara Lauren

“No disability should hold us back from anything our hearts desire.” ~Mara

Women On The Move | Change Your Mindset, Change Your Life

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Hi, my name is Mara Lauren. I was diagnosed with a rare eye condition called Retinitis Pigmentosa (RP) in 2010. Recently, I was diagnosed with Usher Syndrome, which not only includes vision loss but also hearing loss.

When I was first diagnosed with RP it was a big life-changing experience. I was told I was going blind and there was nothing I could do to prevent this. The initial diagnosis by a Doctor who had little education on the subject was very callous. His uncaring approach made me feel hopeless and lost, which caused me to go into depression for a 2-year period. That depression stage of my life was tough as if I didn’t want to live anymore.

Feelings Of Isolation

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The feeling of being alone, not knowing what will happen and what the future would bring really hit me hard. I disconnected from the world and the feeling of not wanting to live anymore was always on my mind.

Eventually, I with the right people. The right specialists who helped to give me hope and let me know this eye condition shouldn’t stop me from living the life I want and it wasn’t the end.

Mara

In 2014, I started to really look at my life and I knew I had to change my mindset. That this depression was the jolt I actually needed to start focusing on what really matters and to completely revamp my life by staying positive. It was at this point with the help of my caring husband by my side, I have done just that.

Kicking It Up A Notch

I started getting involved with The Canadian National Institute for the Blind (CNIB) as a support group leader, I am part of The Foundation Fighting Blindness(American and Canadian organizations), also I have recently joined Trailblazers Tandem Cycling Club (a registered charity, who provides recreational cycling to people who have limited or no vision).

In the summer of 2016 I conquered Cycling For Sight, a fundraising event with The Foundation Fighting Blindness to find a cure for degenerative blindness. This was one of my biggest accomplishments thus far because it has been one of my goals since being diagnosed, it wasn’t easy but I was able to complete the 91km event.

Now that 2017 is here, I have signed up to do the full race of 180km Cycle for Sight that will be held in June 2017 and signed up for different activities that I want to try. So you have to wait for it and see what I’m up to!

 

Catching Up With Mara

Mara

I will also try to blog more this new year and you can find me on atemara.com or simply my Instagram, atemara. Outside of social media, I pretty much keep myself busy with all the organizations I’m involved in and I try to live a fit active lifestyle by working out and eating healthy, but of course occasionally I must indulge.

Another big aspect of my life is traveling, spending time with loved ones and just enjoying life to its fullest. I always say, no disability should hold us back from anything our hearts desire. We can still do it all.

WOTM 34 Featured Image Description:

Photo of Woman On The Move Mara in boldblindbeauty.com’s WOTM template. She is looking very stylish wearing fashionable shades while sitting outdoors holding a coffee cup in her right hand. Three-quarters of the template contains the photo and in the bottom portion is Mara’s quote in teal text.