On the first Sunday in May, 32,000 cyclists of all skill levels come from around the world to roll through every borough of New York City on streets totally free of cars. For one day, the roads are yours, the bridges are yours, the City is yours—there’s no better way to experience the Big Apple. Produced in conjunction with the City of New York, the TD Five Boro Bike Tour Presented by REI is the largest charitable bike ride in the U.S., with proceeds funding our free bike education programs. Last year alone, we taught bike skills to more than 17,000 kids and adults. When you ride with Bike New York, you’re helping us in our mission to empower more New Yorkers to grab life by the handlebars.
On Friday, December 2nd, EB Research Partnership Co-Founders Eddie and Jill Vedder attended the NASCAR Sprint Series Awards Banquet in Las Vegas Friday to pay tribute and surprise their friend Tony Stewart, the race car driver who recently announced his retirement. Both the Vedders and Tony Stewart were surprised though when Hendrick Motorsports owner Rick Hendricks took the podium to reveal that the NASCAR community had made a donation of $1.8 million on behalf of Stewart to EB Research Partnership.
We at EB Research Partnership are beyond thrilled- and so grateful to be a part of this generous gesture to honor Tony. If you’d like to donate to this campaign, visit us at ebresearch.org/smoke.
If you’d like to read more about this event, you can check out one of the recent articles here.
In Mid-October, we held our second Community Council of the year, a series of podcasts about current clinical trials. Leading EB researchers discussed the clinical trials mentioned above in video podcasts posted on this page.
The researchers will be answering questions and we will repost them later next week in honor of EB Awareness Week. Please send your questions to us by email (firstname.lastname@example.org) by 9 a.m. EST on Monday, October 24th or post them to our Facebook page. The researchers will be answering questions about the studies, and regret they cannot address personal medical questions.
Our Gold Sponsor:
On Tuesday, May 17, 2016 we conducted our bi-annual Community Council webinar “Beyond Blisters: Managing Distress in EB.” We were lucky to share space with experienced individuals, who described some tactical ways to recognize and deal with stress, anxiety and not being afraid to ask for help. Listen to the recording and view the presentation Community Council May 5.17.2016.
Our Community Council Program was sponsored by:
We had so much fun exploring the Aquarium and listening to some amazing speakers at our annual Night of Discovery: Lighting a Path Towards a Cure event in Long Beach, CA. Thank you to all who came out to support our cause and participated in the exciting auction. We raised over $53,000 with 200 people in attendance.
This event was powered by our Title Sponsor,
Register to Run With Team EBRP For A Truly Magical Experience! April 26th is the day you have to register at RunDisney.com
January 5th – Fabulous 5K through EPCOT
January 6th – Tremendous 10K through EPCOT
January 7th – Half Marathon through the Magic Kingdom and EPCOT
January 8th – Full Marathon through All 4 Parks
Feeling A Little Goofy? Register for the “Race and a Half” – 39.3 Miles of Fun;
You Will Run Both The Half and Full Marathon
Feeling Downright Dopey? Register for the “Dopey Challenge” – 48.6 Miles of Fun;
You Will Run All 4 Races!
How To Sprinkle That Pixie Dust:
It’s really easy! You Just Have to:
1) Register For the Disney Event of Your Choosing
These Races will sell-out, so be sure to register on April 26th!
2) Register With Team EBRP by April 26th; Raise $500 by Race Day
Every runner who registers with Disney and with EBRP by April 26th will receive:
Ready to register with Team EBRP or have General Questions About the Weekend ? Contact Liz at Lizzmorano@aol.com
Where to Register With Disney – www.RunDisney.com
On Wednesday, April 13th, we hosted our second Poker Night a fun and successful evening of Texas Hold’em at the Penn Club of New York. We raised over $87,000 to support groundbreaking research aimed at treating and ultimately curing Epidermolysis Bullosa. Prizes included: $5,000 in cash, 2 complimentary tickets to a SOLD OUT Pearl Jam concert and a bottle of Pappy Van Winkle Whiskey. Congratulations to our Winners and Thank You to all our guests!
Co-Chair: Michael Kahn
Co-Chair: Alex Silver
Full Table Sponsor
Half Table Sponsor