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DECEMBER
When a Child Truly Needs the Best
U.S. News & World Report - Washington,DC,USA She frequently fields calls from overwhelmed parents who were just handed a
rare diagnosis such as epidermolysis bullosa, a group of genetic collagen ...
No, it's not contagious
Los Angeles Times - CA,USA We have a rogue gene in our family that gives her a 50% chance of having a rare skin disease
called epidermolysis bullosa -- EB for short -- characterized ...
Natural chemical found in broccoli helps combat skin blistering ...
EurekAlert (press release) - Washington,DC,USA helps prevent the severe blistering and skin breakage brought on by the rare
and potentially fatal genetic disease epidermolysis bullosa simplex (EBS). ...
Proud dad's challenge
Halifax Today - UK
His sponsorship will go to DebRA which helps families affected by Epidermolysis Bullosa, a rare genetic condition which
causes skin to blister at the ...
U.S. News & World Report - Washington,DC,USA She frequently fields calls from overwhelmed parents who were just handed a
rare diagnosis such as epidermolysis bullosa, a group of genetic collagen ...
No, it's not contagious
Los Angeles Times - CA,USA We have a rogue gene in our family that gives her a 50% chance of having a rare skin disease
called epidermolysis bullosa -- EB for short -- characterized ...
Natural chemical found in broccoli helps combat skin blistering ...
EurekAlert (press release) - Washington,DC,USA helps prevent the severe blistering and skin breakage brought on by the rare
and potentially fatal genetic disease epidermolysis bullosa simplex (EBS). ...
Proud dad's challenge
Halifax Today - UK
His sponsorship will go to DebRA which helps families affected by Epidermolysis Bullosa, a rare genetic condition which
causes skin to blister at the ...
AUGUST 2007
Help sought for children with rare disease
Newsday - Long Island,NY,USA
Owen Farley's granddaughter, 5-year-old Grace Peshkur of Holtsville, NY, has an ailment called EB -- epidermolysis
(EP uh der MAH luh sis ) bullosa (buh LOH ...
RegeneRx Recognized as Major Sponsor of ''National Epidermolysis ...
PharmaLive.com (press release) - Newtown,PA,USA
the signature event of "National Epidermolysis Bullosa Awareness Week." October 25th marks the first day of
"National Epidermolysis Bullosa Awareness Week" ...
Tragedy becomes inspiration
The Border Mail Tue, 23 Oct 2007 7:06 PM PDT
MELANIE and Peter Marshall hope a ball named after their daughter will raise funds for research into a rare skin
disorder. Xantha Marshall lived for only eight-weeks battling the fatal disorder epidermolysis bullosa, also known as
butterfly skin.
'Butterfly Girl' dies at age 24
North County Times - Escondido,CA,USA
To many North County Times readers, she was also known as the "Butterfly Girl," a courageous fighter of a rare and
brutal skin disease called epidermolysis ...
Charity shop celebrates
Northampton Chronicle & Echo - Northampton,England,UK
The Debra (Dystrophic Epidermolysis Bullosa Research Association) shop, which raises money for people with the
genetic skin blistering condition, ...
Courteney Cox & David Arquette's Charitable "CelEBration"
OK! Magazine - New York,NY,USA
... David Arquette's involvement in the organization began when her manager's nephew contracted the rare skin
disease known as Epidermolysis Bullosa. ...
Kilimanjaro trek Redding father and son seek aid for African ...
Redding Pilot - Georgetown,CT,USA
EJ was born with epidermolysis bullosa (EB), "a skin disease so severe that the slightest touch can give him blisters,"
Mr. Seide said. ...
Tragic plight of 'Butterfly Boy'
Milton Keynes Citizen - Milton Keynes,England,UK
Plucky Jordan Young is a 'Butterfly Child' or, more officially, a sufferer of epidermolysis bullosa, a genetic disorder
that causes skin to blister and ...
See all stories on this topic
Medway residents hope for clear water
Milford Daily News - Milford,MA,USA
Megrian-Alessandrini's twin daughters Emma and Olivia, 13, have a rare genetic skin disorder - epidermolysis bullosa
- which causes their skin to blister ...
Introducing John Edward Thomas Moynahan
By Sarah, CBB News Editor
Bridget donated the profits from sale of the photos to the Friedreich's Ataxia Research Alliance [FARA], as well as
the Epidermolysis Bullosa Medical Research Foundation, as her friends have children afflicted by the disorder and ...
Boy's legacy of kindness remembered
The Union of Grass Valley - Grass Valley/Nevada City,CA,USA
22 after a lifetime battle with recessive dystrophic epidermolysis bullosa, EB, a congenital condition that causes skin
to fall off the body. ...
Newsday - Long Island,NY,USA
Owen Farley's granddaughter, 5-year-old Grace Peshkur of Holtsville, NY, has an ailment called EB -- epidermolysis
(EP uh der MAH luh sis ) bullosa (buh LOH ...
RegeneRx Recognized as Major Sponsor of ''National Epidermolysis ...
PharmaLive.com (press release) - Newtown,PA,USA
the signature event of "National Epidermolysis Bullosa Awareness Week." October 25th marks the first day of
"National Epidermolysis Bullosa Awareness Week" ...
Tragedy becomes inspiration
The Border Mail Tue, 23 Oct 2007 7:06 PM PDT
MELANIE and Peter Marshall hope a ball named after their daughter will raise funds for research into a rare skin
disorder. Xantha Marshall lived for only eight-weeks battling the fatal disorder epidermolysis bullosa, also known as
butterfly skin.
'Butterfly Girl' dies at age 24
North County Times - Escondido,CA,USA
To many North County Times readers, she was also known as the "Butterfly Girl," a courageous fighter of a rare and
brutal skin disease called epidermolysis ...
Charity shop celebrates
Northampton Chronicle & Echo - Northampton,England,UK
The Debra (Dystrophic Epidermolysis Bullosa Research Association) shop, which raises money for people with the
genetic skin blistering condition, ...
Courteney Cox & David Arquette's Charitable "CelEBration"
OK! Magazine - New York,NY,USA
... David Arquette's involvement in the organization began when her manager's nephew contracted the rare skin
disease known as Epidermolysis Bullosa. ...
Kilimanjaro trek Redding father and son seek aid for African ...
Redding Pilot - Georgetown,CT,USA
EJ was born with epidermolysis bullosa (EB), "a skin disease so severe that the slightest touch can give him blisters,"
Mr. Seide said. ...
Tragic plight of 'Butterfly Boy'
Milton Keynes Citizen - Milton Keynes,England,UK
Plucky Jordan Young is a 'Butterfly Child' or, more officially, a sufferer of epidermolysis bullosa, a genetic disorder
that causes skin to blister and ...
See all stories on this topic
Medway residents hope for clear water
Milford Daily News - Milford,MA,USA
Megrian-Alessandrini's twin daughters Emma and Olivia, 13, have a rare genetic skin disorder - epidermolysis bullosa
- which causes their skin to blister ...
Introducing John Edward Thomas Moynahan
By Sarah, CBB News Editor
Bridget donated the profits from sale of the photos to the Friedreich's Ataxia Research Alliance [FARA], as well as
the Epidermolysis Bullosa Medical Research Foundation, as her friends have children afflicted by the disorder and ...
Boy's legacy of kindness remembered
The Union of Grass Valley - Grass Valley/Nevada City,CA,USA
22 after a lifetime battle with recessive dystrophic epidermolysis bullosa, EB, a congenital condition that causes skin
to fall off the body. ...
SEPTEMBER & OCTOBER 2007
Brave Maya defies the odds
East Anglian Daily Times - Ipswich,England,UK
She suffers from a rare incurable skin disorder called Epidermolysis Bullosa Recessive Dystrophic
Type 11, which causes her skin to blister and shed at the ...
See all stories on this topic
Yes, Valley, there is a Santa Claus
Monitor - McAllen,TX,USA
The family’s 5-year-old son Ivan suffers from a rare genetic skin condition called epidermolysis
bullosa. The slightest touch or hug blisters his skin. ...
See all stories on this topic
We wish to have an air conditioner for our house.
Their very rare skin disease, epidermolysis bullosa, has forced them out of the sunlight and heat.
Because they live in the southernmost part of Texas, that means they can seldom go outside. The
brothers were not only confined inside ...
East Anglian Daily Times - Ipswich,England,UK
She suffers from a rare incurable skin disorder called Epidermolysis Bullosa Recessive Dystrophic
Type 11, which causes her skin to blister and shed at the ...
See all stories on this topic
Yes, Valley, there is a Santa Claus
Monitor - McAllen,TX,USA
The family’s 5-year-old son Ivan suffers from a rare genetic skin condition called epidermolysis
bullosa. The slightest touch or hug blisters his skin. ...
See all stories on this topic
We wish to have an air conditioner for our house.
Their very rare skin disease, epidermolysis bullosa, has forced them out of the sunlight and heat.
Because they live in the southernmost part of Texas, that means they can seldom go outside. The
brothers were not only confined inside ...
NOVEMBER 2007
autumn gives rise to rapid butterfly migration west from new york ...
FinanceVisor.com (press release) - CA,USA
... "national epidermolysis bullosa awareness week" as designated by congress and the senate in late 2006, in honor
of americans with the genetic disease, ...
girl deals with rare skin disease
Times-West Virginian - Fairmont,WV,USA
but when similar blisters appeared on her feet, knotts began to worry. she took audra to the pediatrician, who actually
had heard of epidermolysis bullosa, ...
See all stories on this topic
For child with rare skin disease, touch is challenge
Pittsburgh Tribune-Review - Pittsburgh,PA,USA
Fallyn, of Hempfield, has an incurable genetic disease called recessive dystrophic epidermolysis bullosa, or EB, that
affects every aspect of her life. ...
Living in memory of Ava
Eagle Tribune - North Andover,MA,USA
It was the end of four months of hope and despair in a battle with a rare genetic skin disease called Epidermolysis
Bullosa. ...
Cheque boosts skin help group
Bolton News - Bolton,England,UK
... November because Tanya Moores, who plays for Freedom Ladies, has a two-year-old son, Rhys, who suffers from
the skin condition Epidermolysis Bullosa. ...
System fails boy
Sunshine Coast Daily - Queensland,Australia
He is a "cotton wool baby", born with the rare disease Epidermolysis Bullosa. Even the slightest touch can cause his
fragile skin to blister and scar. ...
University pioneers rare skin disease treatment Checkbiotech.org (press release) - Basel,Switzerland Recessive
dystrophic epidermolysis bullosa is a childhood disease, which makes the skin extremely susceptible to injury, even
through minor contact. ...
IN THEIR SHOES
Asbury Park Press - Asbury Park,NJ,USA
BY SAMETTA M. THOMPSON Patricia Bevacqui and her family hope that National Epidermolysis Bullosa Week,
designated as the last week in October, ...
FinanceVisor.com (press release) - CA,USA
... "national epidermolysis bullosa awareness week" as designated by congress and the senate in late 2006, in honor
of americans with the genetic disease, ...
girl deals with rare skin disease
Times-West Virginian - Fairmont,WV,USA
but when similar blisters appeared on her feet, knotts began to worry. she took audra to the pediatrician, who actually
had heard of epidermolysis bullosa, ...
See all stories on this topic
For child with rare skin disease, touch is challenge
Pittsburgh Tribune-Review - Pittsburgh,PA,USA
Fallyn, of Hempfield, has an incurable genetic disease called recessive dystrophic epidermolysis bullosa, or EB, that
affects every aspect of her life. ...
Living in memory of Ava
Eagle Tribune - North Andover,MA,USA
It was the end of four months of hope and despair in a battle with a rare genetic skin disease called Epidermolysis
Bullosa. ...
Cheque boosts skin help group
Bolton News - Bolton,England,UK
... November because Tanya Moores, who plays for Freedom Ladies, has a two-year-old son, Rhys, who suffers from
the skin condition Epidermolysis Bullosa. ...
System fails boy
Sunshine Coast Daily - Queensland,Australia
He is a "cotton wool baby", born with the rare disease Epidermolysis Bullosa. Even the slightest touch can cause his
fragile skin to blister and scar. ...
University pioneers rare skin disease treatment Checkbiotech.org (press release) - Basel,Switzerland Recessive
dystrophic epidermolysis bullosa is a childhood disease, which makes the skin extremely susceptible to injury, even
through minor contact. ...
IN THEIR SHOES
Asbury Park Press - Asbury Park,NJ,USA
BY SAMETTA M. THOMPSON Patricia Bevacqui and her family hope that National Epidermolysis Bullosa Week,
designated as the last week in October, ...
JANUARY 2008
Family of babies with skin disorder finds support
By Express-Times staff The community has banded together to help Jerry and Suzanne
Ostrander of Liberty Township cope with the rare, life-threatening illness afflicting their 2-
month-old twins. They suffer from epidermolysis bullosa, which causes blisters and ...
Brave Melissa was a true inspiration
Stockport Express - UK ... will be remembered by family and friends after she lost her
battle with the rare skin condition Epidermolysis Bullosa (EB) on Thursday, January 3. ...
Tough on the inside: Girl, 6, fights for normal life
Centre Daily Times - Centre,PA,USA
McKenzie has a rare genetic skin disorder, epidermolysis bullosa. CDT/Catrina Rawson
That’s one of the smaller side effects of the rare, non-contagious skin ...
By Express-Times staff The community has banded together to help Jerry and Suzanne
Ostrander of Liberty Township cope with the rare, life-threatening illness afflicting their 2-
month-old twins. They suffer from epidermolysis bullosa, which causes blisters and ...
Brave Melissa was a true inspiration
Stockport Express - UK ... will be remembered by family and friends after she lost her
battle with the rare skin condition Epidermolysis Bullosa (EB) on Thursday, January 3. ...
Tough on the inside: Girl, 6, fights for normal life
Centre Daily Times - Centre,PA,USA
McKenzie has a rare genetic skin disorder, epidermolysis bullosa. CDT/Catrina Rawson
That’s one of the smaller side effects of the rare, non-contagious skin ...
FEBRUARY 2008
A Mother's Will
KARE - Minneapolis,MN,USA Epidermolysis Bullosa (EB) affects one in every 50000
children. The disease prevents skin from attaching to the body. Even the slightest touch
or bump can ...
Angels come to the aid of kids with skin disease
Cincinnati Enquirer - Cincinnati,OH,USA ... have created sculptural angels as a fundraiser
for a national organization for research for a cure of the rare genetic disease
epidermolysis bullosa. ...
The ''Barbie(TM) Mariposa(TM)'' Movie Inspires Self-Confidence ...
Centre Daily Times - Centre,PA,USA ... EB Butterfly Necklaces designed by actors
Courteney Cox and David Arquette to support the EB (Epidermolysis Bullosa) Medical
Research Foundation. ...
Relief from terrible pain could be close
Portsmouth News - Portsmouth,England,UK ... by Great Ormond Street Hospital, London,
where doctors are hoping amitriptyline could be a breakthrough for Kendall's condition,
epidermolysis bullosa. ...
A Student Helps In Family's Medical Hardships
CBS 4 - Miami,FL,USA The twins suffer from Epidermolysis Bullosa, an illness that causes
the skin to be fragile, whose symptoms first appear in babies or toddlers. ...
Angel art project takes flight
Community Press - Florence,KY,USA Their two grandchildren, ages 4 and 8, have
Epidermolysis Bullosa. The disease, which affects 50 out of a million people, causes
extremely fragile skin and ...
A really grand night for Hollie
Halifax Evening Courier - UK His three-year-old daughter, Hollie, is battling against
epidermolysis bullosa, a rare and painful genetic condition that causes skin to blister at
the ... Benefit Raises Funds For Baby With Rare Disease
Suffolk Life Newspapers - Riverhead,NY,USA Born with epidermolysis bullosa, a rare
genetic skin disease, Casey's skin blisters and falls off with any friction or rubbing action.
...
Charity song and dance
ic Coventry - Coventry,UK The first concert was held in memory of 10-year-old Amy Yates
who suffered from the skin blistering condition Epidermolysis Bullosa and died last year. ...
WARRIORS ONE COMMUNITY INITIATIVE IS LAUNCED
World of Rugby League - Blacktown,Australia
Scurrah also confirmed Kidz First Children's Hospital and DebRA New Zealand
(Dystrophic Epidermolysis Bullosa Research Association) would be the Vodafone ...
KARE - Minneapolis,MN,USA Epidermolysis Bullosa (EB) affects one in every 50000
children. The disease prevents skin from attaching to the body. Even the slightest touch
or bump can ...
Angels come to the aid of kids with skin disease
Cincinnati Enquirer - Cincinnati,OH,USA ... have created sculptural angels as a fundraiser
for a national organization for research for a cure of the rare genetic disease
epidermolysis bullosa. ...
The ''Barbie(TM) Mariposa(TM)'' Movie Inspires Self-Confidence ...
Centre Daily Times - Centre,PA,USA ... EB Butterfly Necklaces designed by actors
Courteney Cox and David Arquette to support the EB (Epidermolysis Bullosa) Medical
Research Foundation. ...
Relief from terrible pain could be close
Portsmouth News - Portsmouth,England,UK ... by Great Ormond Street Hospital, London,
where doctors are hoping amitriptyline could be a breakthrough for Kendall's condition,
epidermolysis bullosa. ...
A Student Helps In Family's Medical Hardships
CBS 4 - Miami,FL,USA The twins suffer from Epidermolysis Bullosa, an illness that causes
the skin to be fragile, whose symptoms first appear in babies or toddlers. ...
Angel art project takes flight
Community Press - Florence,KY,USA Their two grandchildren, ages 4 and 8, have
Epidermolysis Bullosa. The disease, which affects 50 out of a million people, causes
extremely fragile skin and ...
A really grand night for Hollie
Halifax Evening Courier - UK His three-year-old daughter, Hollie, is battling against
epidermolysis bullosa, a rare and painful genetic condition that causes skin to blister at
the ... Benefit Raises Funds For Baby With Rare Disease
Suffolk Life Newspapers - Riverhead,NY,USA Born with epidermolysis bullosa, a rare
genetic skin disease, Casey's skin blisters and falls off with any friction or rubbing action.
...
Charity song and dance
ic Coventry - Coventry,UK The first concert was held in memory of 10-year-old Amy Yates
who suffered from the skin blistering condition Epidermolysis Bullosa and died last year. ...
WARRIORS ONE COMMUNITY INITIATIVE IS LAUNCED
World of Rugby League - Blacktown,Australia
Scurrah also confirmed Kidz First Children's Hospital and DebRA New Zealand
(Dystrophic Epidermolysis Bullosa Research Association) would be the Vodafone ...