[NFBF-Tampa] Fw: Foundation Fighting Blindness and CheckedUp® Partner to Educate Retinal-Disease Patients About

Wed Jun 13 19:30:32 UTC 2018

Dear All,

                The only issue I have with this is that it is offered by FFB. The Foundation Fighting Blindness has historically taken a very dim, disempowering view of blindness, including their #howiseeit campaign in which they challenged sighted people to blindfold themselves and show how difficult it is to do common, every day tasks, such as tieing their shoes or pouring a liquid. The NFB launched a counter campaign in which we demonstrated how effectively we could do tasks without eyesight. Perhaps I should take a video of me building out my recording studio, laying tile, cutting the grass, or building my gazebo! I am skeptical of any program offered by FFB and any resource they offer due to their negative view of blindness in the quest to raise money by preying on the fears of the public.

                The next time someone gets angry with you because you object to their imposition of their custodial help or their degrading comments, remember how degrading the FFB’s campaign to portray us as incompetent lowers the expectations of the public and the uninformed blind can be!

Fraternally yours,

Marion

From: NFBF-Tampa [mailto:nfbf-tampa-bounces at nfbnet.org] On Behalf Of Jim Lovell via NFBF-Tampa
Sent: Wednesday, June 13, 2018 11:40 AM
To: NFB of Florida Tampa Chapter List
Cc: Jim Lovell
Subject: [NFBF-Tampa] Fw: Foundation Fighting Blindness and CheckedUp® Partner to Educate Retinal-Disease Patients About

Subject: Foundation Fighting Blindness and CheckedUp® Partner to Educate Retinal-Disease Patients About

https://www.prnewswire.com/news-releases/foundation-fighting-blindness-and-checkedup-partner-to-educate-retinal-disease-patients-about-research-resources-and-emerging-therapies-during-doctor-visits-300662565.html

Foundation Fighting Blindness and CheckedUp® Partner to Educate Retinal-Disease Patients About Research, Resources, and Emerging Therapies During Doctor Visits

CheckedUp multimedia system will provide targeted disease and research information to retinal-disease patients in waiting and exam rooms at 1,000 ophthalmology practices in US.

 <https://www.prnewswire.com/news/foundation-fighting-blindness> Foundation Fighting Blindness 

News provided by

08:00 ET

COLUMBIA, Md., June 11, 2018 /PRNewswire/ -- The Foundation Fighting Blindness (FFB) and CheckedUp have formed a collaborative partnership to deliver patient-friendly diagnostic and disease-management information to people with retinal diseases such as age-related macular degeneration, retinitis pigmentosa, and Stargardt disease during their visits to eye doctors. 

FFB, the world's largest private funder of research for inherited retinal diseases, will provide visual and audio content on retinal conditions, helpful resources, and emerging therapies for patients and caregivers through CheckedUp's innovative patient engagement technologies in waiting areas and exam rooms at doctors' offices. 

"Our goal is to ensure that patients and their caregivers understand the retinal conditions, learn about the research underway to overcome their diseases, and know about the valuable resources they can take advantage of now to improve care and drive vision-saving and -restoring research," said Ben Yerxa, FFB's chief executive officer.

Through the CheckedUp engagement system, patients will learn about  <http://www.myretinatracker.org/> www.MyRetinaTracker.org, FFB's free, secure patient registry, which researchers and therapy developers from around the world are using to better understand inherited retinal diseases, and design and launch clinical trials for emerging therapies. Registrants in the system can learn about clinical trials for which they may be eligible.

"The Foundation Fighting Blindness is an invaluable resource for people and families with retinal diseases. The Foundation's partnership with CheckedUp will enable doctors to quickly and easily inform patients about those resources," said Eugene de Juan, MD, Jean Kelly Stock Distinguished Professor of Ophthalmology, at University of California, and CheckedUp board member. "Most important, it will provide those affected with a clear path forward in managing their condition and taking part in the drive for treatments and cures."  

Also, people registered in  <http://www.myretinatracker.org/> www.MyRetinaTracker.org are eligible for FFB's free genetic testing study to attempt to identify the gene mutation causing their disease.  Finding the patient's gene provides a definitive diagnosis and better understanding which studies and emerging therapies may be best for them. Genetic researchers, many of whom were funded by FFB, have identified more than 260 genes, each of which, when mutated, can cause a retinal disease. FFB currently funds approximately 80 prominent retinal research institutions and companies around the world for development of gene, stem-cell, and pharmaceutical therapies.

The Foundation Fighting Blindness was established in 1971. It has since raised more than $725 million for research aimed at preventing, treating and curing blindness caused by retinal degenerative diseases. More than 10 million Americans, and millions more worldwide, have vision loss due to retinal degeneration. Through its support of focused and innovative science, the Foundation drives the research that has and will continue to provide treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and other inherited retinal diseases. FFB-CRI was established in 2004 to advance translational research and clinical development of emerging therapies for inherited retinal diseases.

CheckedUp is a point of care company that actively engages patients before, during and after visiting the medical practice. Our vision and trajectory is to be the premier specialty point of care company providing condition specific, active patient engagement through a variety of different touch points to help patients as they make critical decisions about their treatment. We help practices and doctors engage with their patient to help improve health outcomes and elevate the patient experience.

Contact: Ben Shaberman 
 <mailto:bshaberman at fightblindness.org> bshaberman at fightblindness.org 
 <http://www.fightblindness.org/> www.FightBlindness.org  
Office:  <tel:(410)%20423-0634> (410) 423-0634 
Mobile:  <tel:(410)%20499-9158> (410) 499-9158

SOURCE Foundation Fighting Blindness

Related Links

 <http://www.MyRetinaTracker.org> http://www.MyRetinaTracker.org 

More news releases in similar topics

 <http://www.avg.com/email-signature?utm_medium=email&utm_source=link&utm_campaign=sig-email&utm_content=emailclient> 

Virus-free.  <http://www.avg.com/email-signature?utm_medium=email&utm_source=link&utm_campaign=sig-email&utm_content=emailclient> www.avg.com 

-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://nfbnet.org/pipermail/nfbf-tampa_nfbnet.org/attachments/20180613/4ef74b96/attachment.html>