THE LATEST FROM MACULAR DEGENERATION PARTNERSHIP
NOVEMBER 2016 AMD UPDATE

We wish you and your loved ones a 
Happy & Eye-Healthy Holiday Season! 

 
NuEyes - a wearable computer!


 
Patients referred for low vision therapy are grateful to find handheld magnifiers, text-to-speech systems that 'read' aloud, and video cameras that project images onto a closed circuit television (CCTV) device.  With these devices, printing can be enlarged so books, newspapers, and even the labels on medicine bottles can be magnified.  These adaptive aids help keep a degree of freedom that can be lost as vision slips away.

How much more independence would patients have if they could take their CCTV with them everywhere?


Positive Community Involvement

Macular Degeneration Partnership encourages those with AMD to stay positive and contribute to their community.  This month, we share the story of Norm Hubert, a retired woodworker with macular
degeneration living i n San Diego.  His daughter writes, "Instead of succumbing to encroaching feelings of uselessness as his activity became limited" he started making keepsake boxes that he donates to the local children's hospital where his granddaughter had been treated for leukemia. These boxes honor her memory and allow hospitalized children to hold special items like pictures, notes, stickers, and journals in a special place.  The effort has given Norm a renewed purpose and allows him to continue performing his creative passion without pressure.  

Good job, Norm!  Is there a hobby you can still pursue that will enrich the lives of those around you?  

Tap your App!

TapTapSee: A New Way to See the World
 
If you suffer from AMD, you know how difficult it can be to navigate through your everyday environment.

Thanks to TapTapSee, there is an easy way for you to identify various objects you encounter daily. TapTapSee is an application for smartphones and tablets that can help you identify objects in your kitchen, bathroom, and bedroom, or objects you encounter when you are out shopping.  Read more about TapTap...



What is in your Eye Health Supplement?



More than half of adults in the U.S. take some kind of nutritional supplement.  Ten million individuals take vitamin and mineral supplements specifically for eye health.  In an article published last year, researchers looked at the top-selling brands of ocular supplements based on the AREDS formulae and investigated claims made by the manufacturers. 


CLINICAL TRIALS:
WHERE PATIENTS MAKE A DIFFERENCE


Q:  Can I enroll in a clinical trial using stem cells therapy for treatment for AMD?

A:  There are only a handful of legitimate clinical trials underway.  While there is great hope for these studies, they are years away from application by your local ophthalmologist.       

If you search the terms 'stem cell therapy' and 'AMD' on-line, you may find websites promoting doctors who claim to offer treatments to reverse vision loss and regrow retinal cells.  The practitioners may also claim that their stem cell treatments will cure or relieve diseases as varied as autism to multiple sclerosis.  Injected stem cells, some argue, will rejuvenate the skin, help you lose weight, and improve brain function.

Beware of anything that seems too good to be true!


WEBSITES WE LOVE:  



In keeping with the theme of stem cell therapy ( see story above ), we are highlighting the blog of a scientist who works in the department of cell biology at University of California, Davis.  

The Niche, a blog by Dr. Paul Knoepfler, Ph.D. is this month's website we love. 

As a stem cell scientist and a cancer survivor, his perspective comprises equal measures of hopefulness and caution.  He has addressed the macular degeneration/stem cell controversy in posts he wrote on February 28 and November 21 of this year. 

Regarding stem cell treatments, he offers this observation, "There's some hard-core research that is going to make a huge difference.  There's a bunch of stuff in the middle that might be valuable or might not.  And then there's the snake-oil stuff.  A lot of patients tell me they don't know how to tell the difference."

Read his "Patients guide to Treatments" if you are contemplating stem cell therapy or any other experimental treatment for AMD. He offers some thoughtful considerations.   

YOUR HOLIDAY GIFT MAKES A DIFFERENCE. . . 
 
Your tax-deductible donation to UC-Irvine Foundation is used exclusively to support the programs of the Macular Degeneration Partnership.  


Thank you!  Happy Holidays!



Our Pledge . . .
 
The Macular Degeneration Partnership seeks to provide comprehensive and easily understood information about living with age-related macular degeneration for everyone who needs it.   Visit our website for more information, or call us at 888-430-9898 if you have a question. 
 
Good health to you,
 
Mary Prudden
Executive Program Director
Macular Degeneration Partnership


Founded in 1998, the Macular Degeneration Partnership is a program of the Discovery Cornea and Retina Center, Gavin Herbert Eye Institute University of California, Irvine.

888-430-9898 | www.amd.org | contactus@amd.org