In Focus is published by:
Foundation Fighting Blindness, Inc.
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David Brint, Chairman
Gordon Gund, Chairman Emeritus
Joel Davis, Vice Chairman, Major Gifts
Eddie Russnow, Vice Chairman, Development
Jonathan Steinberg, MD, Vice Chairman,
Research
Warren Thaler, Vice Chairman, Board
Development & Communications
Haynes Lea, Treasurer
Yvonne Chester, Secretary
Foundation National Management Staff
Benjamin Yerxa, PhD, Chief Executive Officer
Jason Menzo, Chief Operating Officer
Stephen Rose, PhD, Chief Research Officer
Patricia Dudley, Chief Human Resources Officer
Russell Kelley, PhD, Vice President,
Investments & Alliances
Foundation In Focus Newsletter Staff
Ben Shaberman, Senior Director of
Communications
Lauren Moyer, Public Relations & Events
Specialist
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© Foundation Fighting Blindness 2018
Team Becca: An Inspired Family Takes on
Usher Syndrome
By Lauren Moyer
Jake and Beth Lacourse are motivated every day
to help their two-year-old daughter, Rebecca,
overcome the challenges of Usher syndrome type
1B.
Of course, there were difficulties when Rebecca
was born deaf. But the diagnosis later on of
Usher syndrome meant their daughter was also
progressively losing her vision. Rebecca currently
has bilateral cochlear implants, which provide
more hearing for her, but she still has some
trouble with balance and night vision.
Jake and Beth have been proactive in finding ways
to help their daughter thrive as a toddler, and at the
same time, they support research to find a cure for Usher syndrome.
Beth’s cousin, who has Bardet-Biedl syndrome — another complex condition
causing retinal degeneration, among other issues — reached out to Beth when
Rebecca was first diagnosed to let her know about the Foundation Fighting
Blindness. Since then, Beth started Team Becca to participate in the Boston
Vision Walk. Beth also organized a fundraiser to celebrate Rebecca and help
raise more funds for a cure. In just two years, their Team Becca fundraiser has
had over 400 attendees and raised over $19,000 for the Foundation.
“We’re most interested in supporting the research to find cures for Usher
syndrome,” says Beth. “That’s why we participate in the Vision Walk and
started our own fundraiser.”
While Beth focuses on fundraising, Jake keeps busy through creative outlets
to help his daughter. He recently invented a toy that would help Rebecca learn
words using braille. This toy, called the BecDot, is a 3D printed rectangular
box that introduces children to braille words using small, colorful toys and
letters. Jake’s BecDot invention has been featured in articles on People, Today
Show, TechCrunch, and more.
“Rebecca inspires us and we just want to make her life easier,” says Beth.
“We want to feel like we are doing something to help her and are making an
impact.”
Beth and Jake want others being diagnosed with similar diseases to know that
it’s “not the end of the world.”
“Rebecca is doing great,” says Beth. “Of course there are struggles and
there’s ups and downs, but she’s such a happy little girl. And she loves life
and even when she falls down, she gets right back up. She’s a very tough and
determined girl.”
You can follow Rebecca’s journey on the Lacourse family’s blog at
https://memoriesforbecca.com/.
Two-year-old
Rebecca Lacourse
