TED Talk - Dr. Francis Collins: We need better drugs

If you're a regular follower (why aren't you?) of the blog you might remember a post entitled A Different Perspective On: Introverts where I sang the praises of the TED Talks. Read the post to find out more. Basically the TED organization motto is "sharing ideas worth spreading." So I came across the above video of a talk featuring Dr. Francis Collins who is  a physician and geneticist. In the video he discusses the need to have better drugs to treat diseases especially rare ones like Stargardt's. There are over 4000 recognized diseases but only drug treatments for 250 of them. Dr. Collins theorizes that if drugs could be redesigned they can treat diseases more effectively. I personally think this is a great first step in improving people's lives as we continue on the path to cures. He also calls for the need for various stakeholders including doctors, scientists, investors and most importantly patients to work together. It's refreshing to hear that there are those individuals and groups in the medical and scientific community who are thinking progressively about solving problems. This is why I love the TED organization because it offers different perspectives to contemplate.
For a transcript of the video click the read more link below.

Teachers of the Visually Impaired Get Schooled

In the above video Ed Summers who is a visually impaired Software Accessibility Specialist at SAS Institute and Diane Brauner a Certified Orientation & Mobility Specialist conduct a workshop with teachers. These teachers work with visually impaired students and are being taught how to use the accessibility features of the Apple iPad to better serve their students. Ed himself who is visually impaired has made it one of his goals to make sure that the visually impaired have every chance to succeed in the world that is heavily being shaped by our technology usage.

Ed and Diane also wrote a brief manual on using the voiceover with Apple ios software here.

(Video Source: BloombergTV)

Artist Yvonne Felix Thriving With Stargardt's

 Photo 1 Attribution: Yvonne Felix Arts | website: http://www.yvonnefelixartwork.com/

It seems that I keep on finding people with Stargardt's who are some how involved in the arts. Well the trend continues with artist Yvonne Felix who I met via Twitter.
Yvonne is a Canadian public and community artist, an educator, an advocate, wife and a mother of two. Oh and she also has Stargardt's Disease which hasn't stopped her from pursuing her goals. 

eSight Eyewear for Low Vision

The above video is from the AMI (Accessibility Media Incorporated) documentary A Whole New Light and features the ALIVIOS eSight Eyeware glasses.
The video features Julia Lewis who is an executive with Stargardt's Disease. She's visiting with a low vision specialist who is showing her how to use the device.
The eye-ware looks like a pair of goggles but there more than that. They have a camera embedded in them that processes images that can be tailored to the specific needs of their users. In the video Julia is shown a picture of members of her family that are brought into focus for her. With the nature of low-vision its difficult for people to make out details such as those of people's faces.
The Ottawa Citizen wrote an article of another patient Yvonne Felix using the AVILOS eye-ware device. She was able to make out the faces of her two children using the device and even was able to complain about how ugly her carpet was. *smiles* You can read the article at the following link:
http://www.esighteyewear.com/ottawa-technology-companys-life-changing-vision-lets-near-blind-see
What is also interesting about the eSight Eyeware company is that it was developed by someone who is personally affected by vision loss. Conrad Lewis' wife, sisters and himself all have some form of visual impairment. So he combined his experience working in the tech industry with his desire to help improve the lives of those with visual impairment to create this revolutionary company.

International Women's Day: Visually Impaired Women Worldwide

If you caught one of my previous post February Is... I express my love/hate paradoxical feelings toward awareness campaigns. I love them because they do bring awareness to causes but sometimes can further marginalize the groups that they are trying to help. The longer I think about it I'm starting to... dare I say it 'LOVE' them. My love/hate feelings arise from the fact that I can already perceive (in my mind at least) this global society where everyone is treated equally with their differences. Then I look around and realize that this isn't happening for everyone. My logic jumped from straight A to Z without considering all the other letters in between. When I look around a second time the seeds of change are sprouting and still are being planted. Sometimes I forget that CHANGE is a PROCESS not an event. Not everyone who is exposed to awareness campaigns will become a change agent but if they can affect at least one person then the are worthy. Awareness campaigns are the first step in making a better world for everyone. People have to be reminded that just because we take a day or a month to bring awareness for many people this is their daily lives.

Singer Kayley Rose Thriving w/ Stargardt's

When I was first diagnosed with Stargardt's I did a Google search on the disease to better orientate myself to my new circumstance. One of the first sites I came across was a blog called Living And Supporting Stargardt's Disease. It's written by Kayley Rose who is a remarkable person minus her having Stargardt's. She writes about her experience with the disease and how it hasn't stopped her from pursuing her dreams. She's an artist (her Facebook page can be found here), a teacher and is a professional singer even appearing on the British edition of the TV singing competition X Factor. The above video is audio featuring Kayley singing The Beatles song Something. Read about Kayley in her own words here.

If you liked the above post you might also be interested in the following:

Michael A. Williams, Award-winning artist w/ Stargardt's 

Sami Stoner: Teen Cross Country Runner w/ Stargardt's

*Disclosure some of the links are affiliate based with Amazon or Google and I do recieve a commission if links are clicked.

I Gotta Go to Rehab... Its Not What You think.

Amy Winehouse famously sang the lyrics "They tried to make me go to rehab and I said no, no, no." in her hit song Rehab. Unlike Amy I acknowledge that I need to go to rehab... not for substance abuse issues but for low-vision. Now many of us who have low-vision will think that it isn't necessary for us to go but we must. Sometimes our pride gets in the way because we might not feel like we have a disability. The reason we feel like we don't have a disability is because of our ability to adapt. I didn't realize for a couple years before my official diagnosis of Stargardt's that I had been engaging in adaptive behavior. But with most people who have some form of macular degeneration our vision is deteriorating and we'll eventually need to adapt our behavior with some assistance.

March Update

Got over the Bump in the Road

If you follow this blog you might remember a previous post A Bump In The Road. At that time I had some difficulty with my health insurance and missed my 6-month follow-up visit with my ophthalmologist. well Tuesday I was able to finally go to my long awaited appointment. I can't give specific details on the exact change in my vision because I have to get the paperwork from my Doc. In April I'll do a side by side comparison between my first visit and this latest one.

What I have noticed is a slight decreased visual acuity in my eyes. I was able to read the first two rows of the eye chart. It was difficult to read the 3rd row though. I was surprised that my left eye is better than my right, I always thought it was the other way around. Also my doctor wrote me a referral to see in his words a "Super Specialist" so look out for future posts.

Another Way for the Stargardt's Community to Connect

Today I created two new communities on Google Plus. I have had the pleasure of meeting many fellow Stargardt's patients on Twitter and Facebook, but I know that everyone doesn't use those social networks. I noticed that Google+ didn't have a strong Stargardt's presence so I decided to create one. The community feature on the social network has its advantages over Twitter lists and Facebook groups. In communities you can better navigate through pasts discussions which eliminates redundant conversations. I made one group that is public so all posts can be searched on Google and I made a private companion support group for people who want to connect with other patients.

Since Stargardt's is a rare disease and patients are so widely spread around the world its vital for us to connect. The groups are open to everyone around the world and their families. 

They can be found here:

The public group - Stargardt's Disease Awareness 

https://plus.google.com/communities/106991972989952787499

The private group - Stargardt's Disease Support 

https://plus.google.com/communities/106991972989952787499

Before I go I have to give special thanks to Beth Omansky who is the admin of one of the two Stargardt's groups I'm in on Facebook Stargardt's Central. She created the group a year ago for people who were diagnosed who needed a private forum to get info and support with dealing with this disease. So that's what inspired me to make the Google Plus version so that more people out there can get support.