THE LATEST FROM MACULAR DEGENERATION PARTNERSHIP
December 2018 AMD UPDATE
 

Welcome to Holiday Season!

Winter brings shorter days and more time for indoor activities. This edition of AMD Update includes tips on diet, travel and a new drug breakthrough. So, enjoy your cold days with positive news that will warm your holiday season.
Looking to 2019 and beyond 

If Santa can't bring a cure for AMD, we will need to rely on researchers conducting clinical trials.  

We highlight 2 studies - one for wet AMD and another for dry AMD, that hold promise.  Click here. 
Holiday Tips 

Will friends be visiting you this Christmas, or will you be a guest at a family member's house?  We offer a few tips and tricks for surviving the Holidays with low vision.  Read more here.

FTC Cracks Down on Stem Cell Clinics

The Federal Trade  Commission is actively pursuing
clinics that are using deceptive advertisements for stem cell therapy.  Two California clinics have been to ordered to stop offering this treatment for AMD.  Read more here. 
Does Sugar Affect Your Eyes?

Holiday season means enjoying sweet delicacies with family and friends.  But be careful with the amount of sugar you consume.  Research has shown a correlation between sugar consumption and AMD.  Click here to read how a low-glycemic index diet can offer protection against retinal disease.  
A New Self-Monitoring App for AMD

Individuals interested in tracking their AMD can download an app for their smartphone.  This quick and fun daily test will monitor subtle changes in your acuity.  If you get an alert that your vision is changing, you can schedule an examination and treatment with your eye doctor.  Click here. 
CLINICAL TRIALS NEWS:
Positive Data on Longer Lasting anti-VEGF
Genentech, the biomedical division of Roche that makes  Lucentis and Avastin, announced results of a clinical trial testing a new anti-VEGF therapy that has the ability to slow down the eye's absorption of the drug.  This may mean that individuals with AMD can extend the time between injections to three or four months.   Learn more. 
Low Vision Services Come to GHEI

Have you considered low vision rehabilitation?  You need not be legally blind or have irreversible vision loss to benefit from the training you will receive, and a referral certainly does not mean your doctor has 'given up' on your treatment.  Read more.  
WEBSITES WE LOVE: 


Do you ever have questions about technology? You want to use a device, but you're not sure it will fit your Low Vision lifestyle? Well, Sam, the guy from The Blind Life, may have the answer!
 
We are pleased to share with you one of our favorite hosts with his own YouTube channel. Sam works with the Bluegrass Council for the Blind in Kentucky and, at last count, has made more than 400 short videos packed with personal tips, tricks, opinions and advice on everything from iPhones, to household gadgets, to caring for his beard!

You will be drawn in by his easygoing style, and how he approaches everything from making coffee to his favorite features on the Amazon Alexa with curiosity and a positive attitude.  Watch The Blind Life and see what we mean.  
Do you have an AMD-related question?

Send your question to amd@uci.edu.  Dr. Andrew Browne, MD, PhD, retina specialist at the Gavin Herbert Eye Institute may provide an answer in a future newsletter, or one of our videotaped segments, which you can find on our Facebook page.  Here is a question from a recent email: 

Q:  Is Stargardt disease something one can correctly call Macular Degeneration? 
A:  
Stargardt macular dystrophy or Stargardt disease is a degenerative process that affects the macula and usually manifests early in life.   
 
Stargardt's is the most common of the JMD (juvenile macular degeneration) diseases; AMD refers to age-related macular degeneration, vision changes typically experienced later in life.  While both processes are degenerative processes that affect the macula, they are distinct diseases.
 
Sometimes the borders that distinguish one disease from another are fuzzy. This probably arises from the similar appearance of different diseases in photographs and on examination. It is important to note that AMD is unlikely to be a single disease, but rather a cluster of different diseases that appear and behave very similarly.   For example, there are a number of gene mutations that have been associated with AMD. There are likely some patients with the diagnosis of AMD who have a mutation in ABCA4, which is the gene associated with Stargardt disease, yet their disease didn't begin to manifest until later in life. 
 
The value in knowing what gene mutations you may or may not have will become more important as we enter the age of personalized medicine using gene replacement therapy and individualized treatments.  However, at this time, routine gene testing is not the standard of care, but may become so in the future.  

For more information:
Go the the Macular Degeneration Partnership Facebook page to see more videos regarding AMD. 
Have you seen our website's new look?  We've added more content and now you can request an Amsler grid magnet or read back issues of AMD Update by visiting www.amd.org   
Make a Difference 

Did you know that 100% of your donation to the UCI Foundation (EIN: 95-2540117) is used exclusively to support the Macular Degeneration Partnership? 

To make an on-line year-end gift, use the  DONATE button.  If you would prefer to mail your check, make it payable to 
UCI Foundation
and send it to: 
Macular Degeneration Partnership
850 Health Sciences Road
Irvine, CA 92697

Thank you for your generosity!  


Our Pledge . . .
 
Macular Degeneration Partnership seeks to provide comprehensive and easily understood information about living with AMD.   Visit Facebook for the most up-to-date information, email us at 
  amd@uci.eduor call us at (888) 430-9898 if you have a question. 
 
Good health to you,
Mary Prudden, Program Director
Jay Santoso,  Community Health Specialist

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

888-430-9898 | www.amd.org | amd@uci.edu