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:
Access Hollywood - Courteney's Cause for the Kids
The Envelope - Get the Dirt at Courteney's EBMRF fund-raiser
People - Courteney Cox: I Lean on Jen Aniston

To purchase Kinerase Skincare products please visit Kinerase, Sephora and Nordstrom

~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
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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!

Boxing: Swapping the onion bag for a punchbag
By Alan Hubbard, Boxing Correspondent
The Independent
September 3, 2006

Courageous Hastings woman deals with rare skin malady
By Tom Rademacher
The Grand Rapids Press
August 31, 2006

Community Rallies Around Boy Who Suffers From Rare Skin Disease
Yahoo! News
August 29, 2006

Brave boy who can’t eat an apple
By Lucy Stephens
The Press
August 24, 2006

Special Summer Camp For Sick Children
By Cheryl Jennings
ABC7
August 21, 2006

Charity walker's air pipe snags
BBC News
August 20, 2006

Walking under water in a Bradford suit
By Mark Casci
This is Bradford
August 19, 2006

MY LITTLE BUTTERFLY PRINCESS
By Paula Murray
Daily Record
August 19, 2006

Scientists give “butterfly girl” new hope
By Liz Fowler
The Courier
August 17, 2006

Courteney's Cause For The Kids
Access Hollywood
August 15, 2006

Get the Dirt at Courteney's EBMRF fund-raiser
By Elizabeth Snead
The Envelope
August 15, 2006

Courteney Cox: I Lean on Jen Aniston
By Jed Dreben
People
August 15, 2006

Charity walker crosses the Mersey
BBC News
August 13, 2006


Steve Young: A new chapter
By Doug Robinson
Deseret Morning News
August 13, 2006

The Butterfly Girl
23-year-old Cristina Perez has a rare, incurable disorder
By Brenda Duran
North County Times
July 29, 2006
photo slideshow

Cindi Hofer ... Keeping her daughter alive
By Brenda Duran
North County Times
July 29, 2006
photo slideshow

Jefferson Awards - A Place for Kids to be Kids
By Kate Kelly
CBS5
July 26, 2006

Sadness at successful organ festival – it may be the last
King's Lynn Today
July 23, 2006

Lucy rests up after marathon cycle for charity
Midlothian Today
July 19, 2006

Little boy's gift is showing us how to live well
The News Leader
July 16, 2006

WALKERS URGED TO TACKLE YORKSHIRE CHALLENGE
By Ben Pindar
Community Newswire
July 13, 2006

Family spread wings for butterfly children
News.Scotsman.com
July 3, 2006

Tatum's world
By Krista McFadden
St. Thomas Times-Journal
June 10, 2006

Sacre bleu!
By Sarah Nicholls
Swindon Advertiser
June 1, 2006

Skin disorder girl's award
Sheffield Today
May 18, 2006

HOSPITAL PARKING FINE FOR DYING DOUGLAS
By John Ferguson
Daily Record
May 16, 2006

My baby joy
Greenock Telegraph
May 13, 2006

Simple touch is painful experience when you have epidermolysis bullosa
BY DARRELL CLEM
Hometown Life
May 11, 2006

Pupils wear it well to help brave Lucas
By Ian Rosser
Leeds Today
May 9, 2006

The "Butterfly Boy"
By Ed Yeates
KSL.com
May 4, 2006

Teenager’s debut single hits stores
By Bolton Evening News Reporter
This is Lancashire
May 3, 2006

Hat auction's a swell idea
By The Huddersfield Daily Examiner
icHuddersfield
May 1, 2006

Beyond pain — Parents of daughter born with rare skin disorder look to God for relief and joy
By Alex Murashko
Christian Examiner
May, 2006

Hats off to Nell as she launches charity online celebrity auction
By debbie leigh
Leeds Today
April 28, 2006

Charity's head girls
By Dan McMullan
Manchester Evening News
April 21, 2006

Stars back charity hat auction
u.tv
April 20, 2006

Kilkenny group to take on Kerry Challenge
By Naoise O' Donovan Coogan
Kilkenny Advertiser

McCormack wins quilt
Salem Times-Commoner
April 7, 2006

BEYOND PAIN
By Alex Murashko
Assist News Service
April 2, 2006

Central Ohio Business To Help Boy With Rare Disease
nbc4i
March 16, 2006

Icy trek for James
icLiverpool
March 6, 2006

Kim Luty uses scrapbooking to illustrate that it's our differences that make us the same
PRWeb
March 1, 2006

WILL OUR BABY LIVE?
By Robert Mcaulay
sunday mail
February 26, 2006

Shefali plans to join the fun
icSolihull
February 24, 2006

Putting a face on rare skin disorder
By Charlie Russo
The Boston Globe
February 16, 2006

A delicate life for a boy with skin like a butterfly's wing
By Stephanie Akin
The Eagle-Tribune
February 11, 2006

Paul sets up home in freezer!
Whalley News
February 8, 2006

Raising funds in memory of Jay
Greenock Telegraph
February 7, 2006

Trujillo overcame pain to learn, laugh with others
By John Aguilar
Rocky Mountain News
February 6, 2006

Local family coping with devastating effects of EB
By Bob Haney
Salem Times-Commoner
January 27, 2006

Liam’s a true champion
By Kath Gannaway
Star News Group
January 24, 2006

Scarred by red tape
By Kelly Lecker
The Columbus Dispatch
January 22, 2006

Basketball junkie is unstoppable
By Joseph Smith
The Modesto Bee
January 19, 2006

Donations help provide wheelchairs, van for 'butterfly children '
By Dave Stephens
The Hutchinson News
December 28, 2005

Counting Crows' drummer surprises boy with new drum set
By Raam Wong
North County Times
December 26, 2005

Butterfly Children
By Ella Johnson
Courier & Press
December 26, 2005

Feeding tube may be next
By Ella Johnson
Courier & Press
December 26, 2005

Step out for festive walk
ic Solihull
December 23, 2005

Scott's creation is an e-card first
Colne News
December 19, 2005

Rocker surprises local boy
By Debbie Ramsey
Fallbrook/Bonsall Village News
December 16, 2005

Painful skin condition can't keep kids down
By Patty Brant, Caloosa Belle
Newszap.com
December 14, 2005

Kindness is off and drumming in Fallbrook
By J. Harry Jones
San Diego Union-Tribune
December 13, 2005

Kristin Evans won't let painful skin disease stop her attempts at a normal life
By Jessica Adler
North Jersey Herald News
December 13, 2005

Brave Melissa meets television favourites
By Lisa Woodhouse
Stockport Express
December 7, 2005

Scrapbooking Expert Invites DIY Viewers to "Diversify It Yourself"
PRWeb
December 6, 2005

Victorian night will roll back the years
By Andrew Heath
ic Coventry
November 30, 2005

'Fragile skin gene' killed baby
BBC News
November 19, 2005

Soldier shot down in Iraq
By Jim Kasuba
Heritage Newspapers
November 17, 2005

He was proud to serve
By Jason Schaap
The Truth
November 12, 2005

Indiana Man With Rare Disorder Beats Odds
The INDY Channel
November 10, 2005

Alexander Alaga (Alex) Melkic
By Diane Brady
GlobeandMail.com
November 7, 2005

True charity's Atlas at work
Daily News Boroughs
October 23, 2005

Girl's brave battle leaves kin inspired
By Erin Emery
Denver Post
October 19, 2005

Normal ~ as he knows it
By Alan Wooten
Kenai Peninsula Online
October 9, 2005

My heart went out to little Amy
By Andrew Heath
icCoventry

Former MP Portillo takes president role for charity
By Nick Capehorn
icBerkshire
September 28, 2005

Appeasing the gods won't make the pain go away
By Nancy Katz
Cape Gazette
September 28, 2005

Bob goes coast to coast for worthy causes
Biggleswade Today
September 25, 2005

Warren joins the fight against skin disorder
By Ron Lewis
The Times
September 23, 2005

2 organizations donate $35,000, clothing
Staten Island Advance
September 16, 2005

Millstone toddler lives under wraps
By Michelle Gladden
Asbury Park Press
September 14, 2005

Terrified to cwtch my little girl
By Nathan Bevan
icWales
September 11, 2005

This Isn't Your Grandma's Scrapbook
By Kim Luty
eMediaWire
September 11, 2005

Bankhead pupils prepare to take the plunge for charity
September 1, 2005

Self-belief puts Dean in the running for relay
By Margaret Wenham
The Courier-Mail
August 27, 2005

Football legend to help Millstone’s ‘Baby Jake’
By Jennifer Kohlhepp
Examiner
August 25, 2005

Man messing about on the river makes thousands for charity
By David Ward
The Guardian
August 23, 2005

Man in skydive for skin charity
BBC News
August 19, 2005

'Butterfly' sufferer's 12,000ft leap of faith
By Emma Brady
The Birmingham Post
August 15, 2005

Prisoners in their own bodies
By Dave Stephens
Kansas City Star
August 6, 2005

Charity river-walker prays for no rain
By Alexandra Wood
Yorkshire Post Today
August 5, 2005

FAMILY FUN DAY AT BEVERLEY
SportingLife.com

Minter And Hatton Clash
EastSideBoxing.com
July 20, 2005

Courteney’s cause
MSNBC
July 13, 2005
(I am mentioned and even quoted in this article!)

Positive in the face of pain
By Martin Johnston
The New Zealand Herald
July 12, 2005

Tornado teams join the long haul for charity
By Paul Jeeves
Yorkshire Post Today
July 11, 2005

A Mother's Love
By Joannah Bharose
Trinidad Express
June 26, 2005

Camp gives ailing kids week of fun
By C.W. Nevius
San Francisco Chronicle
June 18, 2005

Pain and uncertainty
By Colin Hunter
The Record
June 2, 2005

Rare disorder leaves PN family grateful for friends
By Ashley Sanders
Port Arthur News
May 20, 2005

Angel Among Us
By Amanda Greenway
May, 2005

Play Eases Pain for Boy who Lives Under Wraps
By Greg Meylan
May 1, 2005

Rare Skin Disease Causes More than Medical Problems
By Melanie Ruberti
WTOC
April 29, 2005

The World According to Alice ... as it is, and could be
Ron Corbett
The Ottawa Citizen
March 12, 2005

Mom Who Lost Child Aids Others With Skin Disorder
By Melissa Gagliardi
Special to The Courier-Journal
March 9, 2005

Defying the Odds One Young Woman's Everyday Challenge
By Anthony Davis
Texarkana Gazette
March 6, 2005

The Girl at War with Her Skin
By Helen Sturdy
Evening Gazette
March 3, 2005

Have a Knockout time and help sufferer Eva
Preston Today
February 18, 2005

Gary Goes North for Skin Victims
By Jack Hunter
Weston Mercury
February 11, 2005

Handle With Care: Hanna's Skin Disease
By Carol Williams
Novemeber 6, 2004

The Boy Whose Skin Fell Off
CBC World News
October 11, 2004

Innovative Painter
Chennai Online
June 2, 2004

Hitting Life's High Notes
By B. Robert Zawrotny
BYU Magazine
Spring 2004

EB Disease is No Handicap
By Jeff Pikulsky
Valley Independent
April 27, 2004

"My Flesh and Blood" Review
TV Barn
April 13, 2004

Skin Condition Boy's Brave Fight
BBC News UK
April 6th, 2004

Dad Pedals Off in Memory of Baby Son
By Owen Morris
St. Albans Observer
March 31, 2004

Moved to Give
Daily Record
March 29th, 2004

Butterfly Boy
By Jane Woodhead
March 26th, 2004

Insight into Skin Disease Agony
By Sarah Portlock
March 22, 2004

Skin Deep (Review of The Boy Whose Skin Fell Off)
Sunday Herald Online, UK
March 21, 2004

The Bravery of Matthew
By Mat Nicholson
Salford Advertiser

Death is Freedom, Life is a Lesson
By Moira Petty
Times Online
March 17th, 2004

Family Copes with Rare Affliction
By Jera Stone
Aberdeen News
March 7, 2004

Latest in Kids' Medical Advances
By Daniela Lamas
Knight Ridder Newspapers
February 4, 2004

Changing Lives
Jan 9, 2003

Love Conquers All, Woman to Adopt Afflicted Trio
By David Mirhadi
The Union
December 16th, 2002

Man with Rare Skin Disease Gives His Support to Others September, 2002

Times Change - A Family's Story About Living With EB
By Robyn Gobert
e-bility
May, 2002

A Battle Every Day
August 4, 2001

Community's Support Making a Difference for Baby Noelle
By Peggy Goetz
Irvine World News
April 5, 2001

Life With Disabled Daughters was Filled with Sweet Sorrow
Dear Abby
December 16, 2000

Tough Love, Wilander Seeks Awareness For ill Son
CNN/SI
December 21, 1999



EB RESEARCH UPDATES
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RegeneRx Receives $545,000 Grant from FDA; Funding for Clinical Development of TB4 for Epidermolysis Bullosa
August 6, 2006

Cambrex and Ortec Submit to FDA a Humanitarian Device Exemption (HDE) for OrCel(R) to Treat Epidermolysis Bullosa Patients
July 17, 2006

New technique helps couples avoid transmitting tragic diseases to baby
June 20, 2006

Frost & Sullivan's Technology Innovation Award Bestowed Upon RegeneRx for Its Development of the TB4 Technology Platform
PRNewswire
October 26, 2005

Bethesda biotech firm is banking on a molecule
August 12, 2005

Protein Key to Skin Cancer Spread Found
By Ed Edelson
Health News
March 17, 2005

Gene Therapy Update March 2005
(please note this is in PDF format, you need Adobe Acrobat to view it)

Nu Skin Supports Stanford Dermatology Gene Therapy: The Nu Skin Center for Dermatologic Research
(please note this is in PDF format, you need Adobe Acrobat to view it)

DebRA International Current Research Projects

DebRA International Completed Research Projects













Enchanting Designz Graphics
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
email me
Events and Fundraisers

EB on TV

EB  In Magazines

EB in the News

EB Research Updates
This page was last updated on: January 13, 2015
News and Updates
EB ON TV
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~ 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,
www.same-differences.com

- 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
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- 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.


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Shades include: Opalescent Petal Pink, Starlit Periwinkle, Deep Amethyst, Shimmering Golden Kiwi, and Midnight Black.
Click to enlarge
Click to enlarge