[NFBMO] FW: Making Sure You Know of Stargardt Summit

[Bryan]

Hi,

 

Here's something we don't usually hear about:

Bryan

 

 

From: marthajs at verizon.net <marthajs at verizon.net> 
Sent: Monday, January 27, 2025 4:28 AM
To: marthajs at verizon.net
Subject: Making Sure You Know of Stargardt Summit

 

Our Time is Now: The 2025 Stargardt Summit

Hosted by the Carroll Center for the Blind in collaboration with Foundation
Fighting Blindness and The Blind Life. Sponsored by Alkeus Pharmaceuticals. 

In Person or Virtual via YouTube ensuring unlimited virtual access

 

Our Time is Now-there has never been a more promising time for research for
treatments for Stargardt, more breathtaking advances in assistive
technology, more connection between our community and helpful resources, and
more excitement about the first ever fictional film in the making about
Stargardt, SEEING STARS, sure to be an awareness explosion. 

 

Join us virtually or in person:

When: Saturday, February 22, 2025, from 10 AM to 4 PM EST

Where In Person: Newton Country Day School of the Sacred Heart, 785 Centre
Street, Newton, Massachusetts, USA

 

Panels will focus on research advances, families sharing experiences with
their journeys with Stargardt, and individuals with Stargardt offering tips
on advocating for oneself in educational, workplace, medical, or other
settings. 

Presenters/Moderators, all of whom have Stargardt:

Keynote: Kenyetta McCurdy-Bird: COO of REACH Riverside Development
Corporation in Delaware

Master of Ceremonies: Adam Chodak: news anchor and managing editor at
Rochester, NY, TV station

Moderator 1: Ellen Gould: double Emmy award winning writer and actor
currently making a film, SEEING STARS, about women with Stargardt

Moderator 2: Michael Marciello, M.D.: Physiatrist with his own practice in
Massachusetts and beep baseball coach

Moderator 3: Sam Seavey: founder of The Blind Life YouTube channel and
renowned assistive technology expert

And special video from the entertaining Two Blind Brothers, Brad and Bryan
Manning

Research panel includes Dr. Rachel Huckfeldt of Massachusetts Eye and Ear,
Dr. Kenneth Fan of Retina Consultants of Texas, and Dr. Brittni Scruggs of
the Mayo Clinic.

Panelists for the other two panels include Paul Protentis and Barbara Duffy,
parents of a young adult with Stargardt; Bhavna Taylor and her son, Ethan,
who has Stargardt, coming from the U.K. and Stargardt's Connected; Sarah
Danny and her two young daughters with Stargardt, who call themselves the
Stargardt sisters; Jack Duffy Protentis, entrepreneur and founder/CEO of
eSki Watercraft; Matt Philapenko, visionary assistive technology expert at
Microsoft; and Stephanie Renford, disability advocate and content creator.

Following the panel discussions, the virtual attendance will end
(approximately 1 PM EST). In person attendees will continue to lunch and
then break out sessions in the afternoon to network and connect with others
in the community.

 

To learn more or register, please visit
<https://carroll.org/events/stargardt-summit-2025/>
https://carroll.org/events/stargardt-summit-2025/

 

 

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