Please visit the EB Events Calendar to view or add EB related events such as support group meetings, fundraisers, etc.
CURRENT EVENTS AND FUNDRAISERS:
~Courteney Cox, Sephora and Cargo~
CARGO will donate 100 percent of the sales from this palette to go to the EB Foundation,
a volunteer non-profit organization dedicated to the support of medical research of Epidermolysis Bullosa or EB (a rare, painful skin disorder), its causes, the development of successful treatments, and ultimately its cure. Click HERE to learn more!
Thank you Courteney Cox!
Myself and the entire EB community give thanks from the bottom of our hearts to Courteney Cox for helping to raise awareness and funds for Epidermolysis Bullosa. Thanks to her generosity and compassion she is helping this disorder come out of the shadows. With a disease that can impact lives so greatly and often make EB families feel alone and helpless much of the time, it has been a true blessing to have someone like Courteney be able to speak out for us and let the world know that this disorder exists. A big thank you to Cargo and Sephora for your generosity and thank you to anyone who buys this eye shadow, it is appreciated beyond words.
The first annual EBingo night was held on August 14th, 2006 in West Hollywood California. It was a night full of fun, food, laughs and luck as people dined and played Drag Queen Bingo! The attending included David Spade, Reese Witherspoon, Ricky Lake, Rosanna Arquette, James Marsden, Holly Robinson Peete, Skeet Ulrich, Courteney Cox Arquette and David Arquette of course, and many more!
There was a silent auction which included such items as a beautiful butterfly painting and a live auction. A video was shown about EB which seemed to touch the hearts of everyone in the room. Courteney announced on stage that Kinerase Skincare will be donating 5% of their sales of their new Vitamin and Clear Skin Collections to the EBMRF through the month of October! The president of Kinerase then presented a check for $35,000 to go toward EB research! The event raised $200,000 in total for the EBMRF, making EBingo night not only a fun night but a huge success! Huge thanks to Andrea Pett-Joseph for putting this amazing event together, Courteney Cox, Kinerase Skin Care, all those who attended and all those who helped make this event possible, THANK YOU from the bottom of my heart!
Thank you also to Access Hollywood and Billy Bush for doing an amazing segment about the fundraiser.
Please click here to see a video of the Access Hollywood segment.
Chris, AKA The Magic PEZ Man, and Jennie, have started a non-profit organization called TPD (Traveling PEZ Dispenser) which helps raise money for Cancer and now EB! They have chosen a special PEZ Dispenser (a butterfly dispenser which they have named Dylan in honor of a little boy with EB) that will be sent all over the world along with a journal where people can write in it and take pictures to show where "Dylan" has been. To sign up to be one of the participants and to donate money to the cause, please visit www.tpd.zoomshare.com The butterfly PEZ dispenser will begin it's travels on October 22nd, 2005. 100% of the money raised will go to the EBMRF which in turn uses 100% of the money toward EB research.To learn more and get involved with this fundraiser please visit www.tpd.zoomshare.com and www.ourgrace.org
~The 8th Annual Mats Wilander Celebrity Tennis and Golf Classic~
Will be held Monday, October 16, 2006 at the Westchester Country Club in Rye, New York. The day begins with a delicious continental breakfast in the early morning followed by a tennis clinic with Mats Wilander, John McEnroe and a host of internationally-known tennis champions. Mats and John will play an exhibition match befitting their world famous status in the tennis arena. There are also fast serve and shot-making competitions for tennis participants, as well as an afternoon tournament. Following an elaborate brunch and a mid-morning shotgun start, golfers join celebrities on the famous West Course for some of the best 18 holes on the PGA Tour. At the end of the day, players will have the opportunity to know just how well they stack up against the pros. After a full day on the courts and greens, our guests will enjoy an elegant cocktail reception with a silent auction before heading inside to a three-course dinner and dancing to live music by New York City’s hottest dance band, The Stingers.
Welcome to the news and updates page where you can find out about upcoming EB events and fundraisers, links to news articles featuring EB, upcoming tv shows featuring EB, and also where to go for the latest research updates on gene therapy for Epidermolysis Bullosa.
If you know of any current fundraisers, news/tv stories, research updates etc. please
- Bruce Gunn, who has EB, will be on the show One Step Beyond on the Discovery Channel sometime in early 2006. Check back for official date and time.
~ PAST SHOWS ~
- On August 15, 2006, Access Hollywood and Billy Bush did an amazing segment about the EBingo fundraiser.
Please click here to see a video of the Access Hollywood segment.
- On December 18th, 2005, Kim Luty, who has EB, was on the DIY (Do It Yourself) Channel for their Croppin' USA Weekend. They featured her product line and mini-book scrapbooking projects. If you want more information and links, go to her business website,
- On Thursday, November 10th, Jeremy London was on Celebrity Poker Showdown on Bravo and the charity he chose to play for was the EBMRF. Thanks so much to Jeremy London!!!
- On Sunday, November 6th, the amazing Tom family was on a two hour special of Extreme Makeover: Home Edition. The episode was extremely moving and inspiring. They did so much to honor the memory of Anthony, it really touched my heart. Susan Tom and her family certainly deserved this amazing gift and I know their new home is full of love and hope. To learn more about the family and to see photos of their home makeover please visit the Extreme Makeover: Home Edition website.
(For those who don't know, Susan Tom, an amazing women who has adopted several children with disabilities, including two with RDEB. Sadly both with EB passed away, one being my friend Anthony who passed away last December. An award winning documentary was made about the family called My Flesh and Blood. Visit the HBO website for more information. My Flesh and Blood is available on DVD, please visit the main page of this site for a link to buy a copy from Amazon.com)
- On Friday, September 30th, 2005, I was on a show called Medical Incredible on the Discovery Health Channel. The show turned out really well. It will most likely air again in the future. The title of the episode I am in is called "Butterfly Skin". My story is near the beginning of the program. You can check the Discovery Health channel website for upcoming episode dates and times.
- On Friday, July 22nd, 2005, the wonderful Courteney Cox was on the Today Show where she talked about EB and the EBMRF. She did a wonderful job and her involvement and support for EB research and awareness is appreciated beyond words. On behalf of the whole EB community, thank you Courteney!
- On Tuesday, July 12th, Access Hollywood featured a story about an EBMRF fundraiser in L.A. that I was extremely fortunate to have been able to attend. I got to meet Courteney Cox and David Arquette, and they even showed part of my interview on Access Hollywood! It was all so exciting and very surreal. Thank you to Andrea for putting together such an awesome fundraiser. Thank you to Kinerase Skincare and thank you to all the people and celebities who were there to support the cause.
-The Boy Whose Skin Fell Off is a documentary about 36 year old Johnny Kennedy who was born with Dystrophic Epidermolysis Bullosa. Originally airing in the U.K. it has now aired here in the U.S. on The Learning Channel (TLC), June 26th, 2005 at 8pm and aired again in August. Visit the DebRA UK site for more information.
Thank you to everyone who not only watched the documentary but took the time to research EB and find my site to learn more. Thank you for the wonderful messages I recieved and a special thank you to Jonny Kennedy who I am sure if watching down on us very happy and hopefully proud at his accomplishments.
-It was discovered that the celebrity Scott Wolf was recently on the show Celebrity Poker Showdown on Bravo and the charity he played for was the EBMRF (Epidermolysis Bullosa Medical Research Foundation)!!! Thanks to Scott Wolf for his generousity!
-On November 11th, 2004 Maury Povich featured a 14 year old girl named Katora who has EB. I didn't get a chance to see it but heard it was a very nice segment and Katora sang. Visit Katora's website by clicking here. She also has a CD out which you can purchase by going here.