Events

Get Cyc’ed to Ride for EB 2017

More Info
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
  • 5 raffle tickets for chances to win great prizes

 

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.

5 Boro Bike Tour 2017

More Info
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

More Info
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.

 

ACTion for Jackson

More Info
3 Nov

Thank you for joining us at our Annual Celebration at the New York Public Library.

You're Invited to ACTion for Jackson

 

Pay it Forward for EB Awareness Week

More Info
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

More Info
20 Oct
10-20-2016-11-58-22-am

 

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.

EB Awareness Day at the Mets Game

More Info
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.

 

unnamed

 

May Community Council

More Info
17 May

Our Gold Sponsor:

shire logo

 

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:

Fibrocell-Logo-Color-Web

 

amicus-logo

 

MPCS_logo

 

Night of Discovery

More Info
6 May

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.

 

IMG_6296                           IMG_6437

 

This event was powered by our Title Sponsor, 

ecmc group logo

 

Disney Princess Marathon

More Info
26 April

Register to Run With Team EBRP For A Truly Magical Experience! April 26th is the day you have to register at RunDisney.com

 

The Events:

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:

  • A Personalized Fundraising Page On Crowdrise
  • An Extremely Cool Team EBRP Running Shirt
  • A Runner’s Meet and Greet at Disney During Marathon Weekend
  • A One Day Pass To the Magic Kingdom*
  • A Really Great Warm Fuzzy Feeling Knowing that You Are Helping to Find A Cure!

 

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