Events

Night of Discovery

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23 Sept

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

If you are interested in sponsorship of this event, please email ryan@ebresearch.org or click here.

 

Event Committee Families:

Bodan                            Hall

Ceretto                          Hermes

Cook                              Kenyon

Freeman                       Shea

Fullmer                        Veres

Garofalow                    Villa Cruz

Hale Hancock             Yidonoy

 

Get Cyc’ed to Ride for EB 2017

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30 April

 

Strap on your spin shoes and join us for a charity ride at Cyc’s brand new Upper East Side location!  

 

Sunday, April 30, 2017

2pm

Cyc UES | 1231 3rd Avenue (btw. 71st and 72nd)

 

$50 Registration includes:

  • An exhilarating 45-minute ride with “Cycologist” extraordinaire Ellie Eagle
  • Complimentary spin shoes and water

 

All proceeds from this event will benefit the EB Research Partnership which is dedicated to funding research for Epidermolysis Bullosa (EB), a group of life-threatening genetic skin disorders.
Reserve your Bike here.

All In For A Cure

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11 May

Come Do It Your Way: Join us on Thursday, May 11th for a evening of cards and classic cocktails at the august University Club. Find your inner Rat Pack-era highroller, grab a martini and secure your seat at this limited capacity event. Starting with a generous bankroll and multiple opportunities for Re-Buys and Add-ons, you can become Chairman of the Board and win a generous Cash Prize. Don’t forget to bring your good luck charm to the party! We will be serving appetizers, cocktails, dinner and dessert.

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5 Boro Bike Tour 2017

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7 May
Join Team EBRP for the TD 5 Boro Bike Tour on Sunday, May 7th in New York
General registration for the the 2017 TD 5 Boro Bike Tour is completely sold out but as an official Charity Partner, EB Research Partnership can offer you a spot as a charity rider.  Imagine joining 32,000 cyclists of all skill levels roll through all 5 boroughs of New York City: 40 miles, 5 boroughs, no cars—all to help #healEB.  Whether you are relatively new to cycling or a an experienced rider, this is the event for you.  Email abbie@ebresearch.org for more details.
More about Five Boro Bike Tour:

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.

NASCAR Community Honors Tony Stewart

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2 Dec

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.

 

Pay it Forward for EB Awareness Week

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25 Oct

Pay it Forward for EB Awareness Week October 25-31.

Simply print and pass out these coupons to help spread the word about Epidermolysis Bullosa. It’s an easy and kind way to share this important issue with others.

Download the PDF file: here

October Community Council

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20 Oct
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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 (info@ebresearch.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.

ACTion for Jackson

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8 Nov

Save the D8 for ACTion for Jackson 2017!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Interested in sponsorship opportunities? Please contact jamie@ebresearch.org.

 

EB Awareness Day at the Mets Game

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22 May

On May 22, EB Research Partnership held the Second Annual Epidermolysis Bullosa Day. The National League Champions took on the Milwaukee Brewers. We had a fun afternoon with friends and family.

 

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May Community Council

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17 May

Our Gold Sponsor:

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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 presenters:

  • Dr. Rebecca Bodán is an Assistant Professor in the School of Nursing at California State University, Fullerton. She was trained at the University of Pennsylvania and the University of California, Los Angeles as a clinician and researcher. Her research has focused on biological mechanisms of depression in those with chronic disease, as well the use of cognitive behavioral therapy as a means for managing depression in vulnerable populations. In 2013 she gave birth to Clara, who was born with a de novo KRT5 mutation, resulting in a severe generalized form of EBS. Like all EB parents, Dr. Bodán has done her best to provide high quality care for her daughter, piecing together what she has learned from EB clinicians, patients, and care givers to care for Clara. As her daughter has grown she has become increasingly frustrated with the lack of focus on the psychosocial impact that EB can have on patients and families alike. She hopes to move the conversation forward in the hopes that those living with, and caring for, those with EB may one day receive more comprehensive care.
  • Jennifer Innes has a Masters Degree in Marriage and Family Therapy and Art Therapy. She also lives with Recessive Dystrophic EB. She works with children of different backgrounds and works with children living with EB.
  • Traci Stein, PhD, MPH, is a psychologist and health educator who has worked in New York City Hospitals, teaches doctoral psychology students about working with the medically ill, and maintains a private practice in Manhattan. She is also certified in clinical hypnosis and fellowship trained in the management of chronic pain. Traci received a PhD from Columbia University and an MPH in community health education from New York University. She is the creator of a series of audio self-help programs on topics ranging from self-hypnosis for healthy weight and body image, changing habits, and enhancing self-esteem, to developing self-compassion and learning mindfulness meditation. Traci’s book, “The Everything Guide to Integrative Pain Management,” has won the Independent Book Publishers Association, Benjamin Franklin Award in the health and fitness category. For more information, visit her website, DrTraciStein.com, or follow her on Twitter (@DrTraciStein) or Facebook (Facebook.com/DrTStein).

 

Our Community Council Program was sponsored by:

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