Overnight Relay from Enchanted Rock to Austin to Save Lives

published in April issue of Tarrytown Newsletter

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Posted in Media Coverage

Mark Shultz, Ph.D – BBDF’s first graduating doctor


Your generous donations are supporting inspiring and promising researchers who are committing their careers to finding a cure for Batten disease. Mark Schultz is one such researcher who recently graduated with a Ph.D. with the help of BBDF funding in

Posted in Latest Update

Local boy to be honored at relay to find cure for his fatal disease

published on March 25, 2014 in Woodlands Online

THE WOODLANDS, Texas–Rarity is the greatest challenge orphan diseases face. Affected patients are spread out across the country and around the world. Less than 100 children in the United States suffer from

Posted in Media Coverage

Beyond Batten Disease Foundation Announces Participation in 2nd Annual “Amplify Austin” Event

In 2008, local Austin couple Charlotte and Craig Benson received the devastating diagnosis that their then five-year-old daughter, Christiane, had juvenile Batten disease. Batten is a rare, inherited neurological disorder that strikes young children, first causing vision loss and seizures,

Posted in Press Releases

Aspiring politician aims to spread word on rare childhood diseases

by Stephanie Buckner in Cleveland Advocate

published March 14, 2014

Juvenile Batten Disease is an extremely rare, fatal and inherited disorder that affects the nervous system and begins in childhood.

For Chuck Meyer, who was most recently a congressional candidate

Posted in Media Coverage

February 2014

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Posted in Newsletter Archives

Going social for Alzheimer’s research

by Jim Cirigliano in Drug Discovery News

published January 10, 2014

NEW YORK—The Alzheimer’s Drug Discovery Foundation has announced a new program that will provide a searchable online marketplace for academic and small biotech researchers seeking contract research organizations (CROs)

Posted in Media Coverage, Press Releases

Overnight run from Enchanted Rock to Austin to Save Lives

How far would you run to save a life? Ten miles? 26.2? Even 50? In late April, 25 teams of runners will run more than 90 miles in a spectacular overnight journey to raise money and awareness for juvenile Batten

Posted in Press Releases

“Don’t Let Disease Be Your Grinch This Christmas,” Says Mother of Patient with Batten Disease

“A Mother’s Story” by Charlotte Benson

republished by The Global Genes Project on December 21, 2013

With the holidays approaching, the children and I have decided to decorate our front yard with characters from our favorite Christmas story: Dr. Seuss’

Posted in Media Coverage

December 2013

Please CLICK HERE to view our newsletter archive from December 2013.

Posted in Newsletter Archives

Alzheimer’s Drug Discovery Foundation Expands its ADDF ACCESS Program to Improve Quality and Efficiency of Drug Research for Neurodegenerative Diseases

NEW YORK, NY, November 6, 2013 – The Alzheimer’s Drug Discovery Foundation (ADDF) announced yesterday the launch of its newly expanded ADDF ACCESS program to provide scientists in academia and small biotechnology companies with access to a virtual network of

Posted in Media Coverage, Press Releases

The Jenyis Report

To view a comprehensive progress report of some of our proudest accomplishments over the past 5 years, please click here.

Posted in Latest Update

October 2013

Please CLICK HERE to view our newsletter archive from October 2013.

Posted in Newsletter Archives

Cheering for Kennedy: Freemont High girls share dreams, friendship with new teammate

by McKenzie Romero in Deseret News

published October 20, 2013

PLAIN CITY, Weber County — From the moment Kennedy Hansen steps onto the field with the Fremont High School cheerleaders, the smile never leaves her face.

“For two hours, she’s

Posted in Media Coverage, News

Running blind toward the light

by Carolina in South Charlotte Weekly published October 18, 2013

Laura King Edwards has participated in the annual Thunder Road Half-Marathon since 2009. But this year’s race is going to be different for the avid runner – she’s going to

Posted in Media Coverage, News

Upcoming Events

Run to the Sun Relay

April 26-27, 2014 Find out more »
Keynote Speaker

As a mother of a child with a rare disease, Charlotte Benson has a unique perspective and message. Her inspiring story combined with her talent for connecting to the hopes, fears, triumphs and struggles we all face in our lives, makes her appealing to all audiences.

Invite Charlotte to speak at your next event »
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