EB EVENTS AND FUNDRAISERS
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.
~EBINGO Night~
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.
Click here to see photos of the event.
Articles about the event:
~TPD~
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.
Please visit the DebRA site for more information.
~Running For a Cure~
Michael Tavani is running in the Chicago Marathon on October 22, 2006 to raise awareness and funds for EB and DebRA.
Michael is running in honor of his niece, Ellie, who has EB. Over $6,000 has been raised already!
To learn more and to support Michael's quest please click here.
EB IN THE NEWS
(Articles open in a new window)
(Click HERE to report broken links)
Click HERE to read articles written about me when I was a baby!
Click HERE and HERE to read two recent articles about me and my mom!
By Alan Hubbard, Boxing Correspondent
The Independent
September 3, 2006
By Tom Rademacher
The Grand Rapids Press
August 31, 2006
Yahoo! News
August 29, 2006
By Lucy Stephens
The Press
August 24, 2006
By Cheryl Jennings
ABC7
August 21, 2006
BBC News
August 20, 2006
By Mark Casci
This is Bradford
August 19, 2006
By Paula Murray
Daily Record
August 19, 2006
By Liz Fowler
The Courier
August 17, 2006
Access Hollywood
August 15, 2006
By Elizabeth Snead
The Envelope
August 15, 2006
By Jed Dreben
People
August 15, 2006
BBC News
August 13, 2006
By Doug Robinson
Deseret Morning News
August 13, 2006
By Brenda Duran
North County Times
July 29, 2006
By Brenda Duran
North County Times
July 29, 2006
By Kate Kelly
CBS5
July 26, 2006
King's Lynn Today
July 23, 2006
Midlothian Today
July 19, 2006
The News Leader
July 16, 2006
By Ben Pindar
Community Newswire
July 13, 2006
News.Scotsman.com
July 3, 2006
By Krista McFadden
St. Thomas Times-Journal
June 10, 2006
By Sarah Nicholls
Swindon Advertiser
June 1, 2006
Sheffield Today
May 18, 2006
By John Ferguson
Daily Record
May 16, 2006
Greenock Telegraph
May 13, 2006
BY DARRELL CLEM
Hometown Life
May 11, 2006
By Ian Rosser
Leeds Today
May 9, 2006
By Ed Yeates
KSL.com
May 4, 2006
By Bolton Evening News Reporter
This is Lancashire
May 3, 2006
By The Huddersfield Daily Examiner
icHuddersfield
May 1, 2006
By Alex Murashko
Christian Examiner
May, 2006
By debbie leigh
Leeds Today
April 28, 2006
By Dan McMullan
Manchester Evening News
April 21, 2006
u.tv
April 20, 2006
By Naoise O' Donovan Coogan
Kilkenny Advertiser
Salem Times-Commoner
April 7, 2006
By Alex Murashko
Assist News Service
April 2, 2006
nbc4i
March 16, 2006
icLiverpool
March 6, 2006
PRWeb
March 1, 2006
By Robert Mcaulay
sunday mail
February 26, 2006
icSolihull
February 24, 2006
By Charlie Russo
The Boston Globe
February 16, 2006
By Stephanie Akin
The Eagle-Tribune
February 11, 2006
Whalley News
February 8, 2006
Greenock Telegraph
February 7, 2006
By John Aguilar
Rocky Mountain News
February 6, 2006
By Bob Haney
Salem Times-Commoner
January 27, 2006
By Kath Gannaway
Star News Group
January 24, 2006
By Kelly Lecker
The Columbus Dispatch
January 22, 2006
By Joseph Smith
The Modesto Bee
January 19, 2006
By Dave Stephens
The Hutchinson News
December 28, 2005
By Raam Wong
North County Times
December 26, 2005
By Ella Johnson
Courier & Press
December 26, 2005
By Ella Johnson
Courier & Press
December 26, 2005
ic Solihull
December 23, 2005
Colne News
December 19, 2005
By Debbie Ramsey
Fallbrook/Bonsall Village News
December 16, 2005
By Patty Brant, Caloosa Belle
Newszap.com
December 14, 2005
By J. Harry Jones
San Diego Union-Tribune
December 13, 2005
By Jessica Adler
North Jersey Herald News
December 13, 2005
By Lisa Woodhouse
Stockport Express
December 7, 2005
PRWeb
December 6, 2005
By Andrew Heath
ic Coventry
November 30, 2005
BBC News
November 19, 2005
By Jim Kasuba
Heritage Newspapers
November 17, 2005
By Jason Schaap
The Truth
November 12, 2005
The INDY Channel
November 10, 2005
By Diane Brady
GlobeandMail.com
November 7, 2005
Daily News Boroughs
October 23, 2005
By Erin Emery
Denver Post
October 19, 2005
By Alan Wooten
Kenai Peninsula Online
October 9, 2005
By Andrew Heath
icCoventry
By Nick Capehorn
icBerkshire
September 28, 2005
By Nancy Katz
Cape Gazette
September 28, 2005
Biggleswade Today
September 25, 2005
By Ron Lewis
The Times
September 23, 2005
Staten Island Advance
September 16, 2005
By Michelle Gladden
Asbury Park Press
September 14, 2005
By Nathan Bevan
icWales
September 11, 2005
By Kim Luty
eMediaWire
September 11, 2005
September 1, 2005
By Margaret Wenham
The Courier-Mail
August 27, 2005
By Jennifer Kohlhepp
Examiner
August 25, 2005
By David Ward
The Guardian
August 23, 2005
BBC News
August 19, 2005
By Emma Brady
The Birmingham Post
August 15, 2005
By Dave Stephens
Kansas City Star
August 6, 2005
By Alexandra Wood
Yorkshire Post Today
August 5, 2005
SportingLife.com
EastSideBoxing.com
July 20, 2005
MSNBC
July 13, 2005
(I am mentioned and even quoted in this article!)
By Martin Johnston
The New Zealand Herald
July 12, 2005
By Paul Jeeves
Yorkshire Post Today
July 11, 2005
By Joannah Bharose
Trinidad Express
June 26, 2005
By C.W. Nevius
San Francisco Chronicle
June 18, 2005
By Colin Hunter
The Record
June 2, 2005
By Ashley Sanders
Port Arthur News
May 20, 2005
By Amanda Greenway
May, 2005
By Greg Meylan
May 1, 2005
By Melanie Ruberti
WTOC
April 29, 2005
Ron Corbett
The Ottawa Citizen
March 12, 2005
By Melissa Gagliardi
Special to The Courier-Journal
March 9, 2005
By Anthony Davis
Texarkana Gazette
March 6, 2005
By Helen Sturdy
Evening Gazette
March 3, 2005
Preston Today
February 18, 2005
By Jack Hunter
Weston Mercury
February 11, 2005
By Carol Williams
Novemeber 6, 2004
CBC World News
October 11, 2004
Chennai Online
June 2, 2004
By B. Robert Zawrotny
BYU Magazine
Spring 2004
By Jeff Pikulsky
Valley Independent
April 27, 2004
TV Barn
April 13, 2004
BBC News UK
April 6th, 2004
By Owen Morris
St. Albans Observer
March 31, 2004
Daily Record
March 29th, 2004
By Jane Woodhead
March 26th, 2004
By Sarah Portlock
March 22, 2004
Sunday Herald Online, UK
March 21, 2004
By Mat Nicholson
Salford Advertiser
By Moira Petty
Times Online
March 17th, 2004
By Jera Stone
Aberdeen News
March 7, 2004
By Daniela Lamas
Knight Ridder Newspapers
February 4, 2004
Jan 9, 2003
By David Mirhadi
The Union
December 16th, 2002
By Robyn Gobert
e-bility
May, 2002
August 4, 2001
By Peggy Goetz
Irvine World News
April 5, 2001
Dear Abby
December 16, 2000
CNN/SI
December 21, 1999
EB RESEARCH UPDATES
August 6, 2006
July 17, 2006
June 20, 2006
PRNewswire
October 26, 2005
August 12, 2005
By Ed Edelson
Health News
March 17, 2005
(please note this is in PDF format, you need Adobe Acrobat to view it)
(please note this is in PDF format, you need Adobe Acrobat to view it)
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
EB ON TV
~ COMING UP ~
- 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.
EB IN MAGAZINES
- People Magazine - In the February 20, 2006 issue of People, starting on page 60 is an article about Jonathon Connolly, a 6 year old boy with EB.
- In Style - In the October issue of In Style, there was a small article about the EBMRF fundraiser in L.A. and Courteney Cox and David Arquette.
- National Enquirer - Be sure to pick up the August 29th issue of the National Enquirer to see a story about my great friend Jamie Gibson! The story is about her EB and amazing singing talent.
- US Magazine - I was told that the August edition of US magazine has an article about Courteney Cox where she also mentions EB and the EBMRF.
New! Only at Sephora! Limited Edition! Eye Shadow Palette - Coco
Five fun, playful shadow shades allow for the creation of soft, summer eyes. Each shadow is sheer, blendable, and can be worn sheer or layered for added intensity.
Shades include: Opalescent Petal Pink, Starlit Periwinkle, Deep Amethyst, Shimmering Golden Kiwi, and Midnight Black.
