| FIND OUT WHAT EB.COM IS UP TO AT WHATSUP? |
Everlasting Butterfly would like to send a big
thanks to NURSE MADELINE WEINER for her
efforts over decade of supporting the EB
community through Debra of America. Madeline
will continue working part time and consulting on
a few projects. Madeline has helped so many
families, including my own, and we are forever
grateful, and wish her well. To read Madeline's
letter, please visit www.debra.org
thanks to NURSE MADELINE WEINER for her
efforts over decade of supporting the EB
community through Debra of America. Madeline
will continue working part time and consulting on
a few projects. Madeline has helped so many
families, including my own, and we are forever
grateful, and wish her well. To read Madeline's
letter, please visit www.debra.org
Left to Right: Madeline Weiner, Leslie Rader, &
Suzanne Cohen.
Suzanne Cohen.
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| 2nd Annual Jennifer Deprizio's Memorial Golf Tournament Saturday, January 20, 2007 CLICK TO LEARN MORE |
| COACH creates their first fragance, which will benefit EBMRF |
Befriend EB is an organization that assists families and children living in Michigan, who suffer from EB. Whether it is assisting financially, fund raising, or respite care. Visit www.befriendeb.com |
LOU's Gift To EB
The EBAN (Epidermolysis Bullosa Action Network) held its
Inaugural Event on January 15th, 2007 at the Avila Golf &
Country Club. Lou Piniella, Manager of the Chicago Cubs
baseball team and two-time American League Manager of the
Year will be the celebrity hosted the event. To see more photos
and learn more about the event go to:
http://ebanusa.org/lousgifttoeb.htm
Inaugural Event on January 15th, 2007 at the Avila Golf &
Country Club. Lou Piniella, Manager of the Chicago Cubs
baseball team and two-time American League Manager of the
Year will be the celebrity hosted the event. To see more photos
and learn more about the event go to:
http://ebanusa.org/lousgifttoeb.htm
| Berwick Baskets is committed to promoting EB Awareness and knowledge by donating a percentage of each sale on this website to the EBMRF. Visit their blog at http://dreamoutloud9.blogspot.com/ |
| DebRA of America, Inc. 5 West 36th Street,Room 404 New York, NY 10018 Telephone: (212) 868-1573 Email: staff@debra.org |
| DebRA Patient Care Conference June 19th-22nd 2008 LEARN MORE |
FOR MORE EB RELATED NEWS VISIT OUR EB POST
ARCHIVE- CLICK HERE
ARCHIVE- CLICK HERE
| OTHER EB CHARITABLE ORGANIZATIONS |
| EB LINKS TO OTHER ORGANIZATIONS THAT ARE INVOLVED IN INCREASING AWARENESS, SUPPORT, AND RESEARCH |
| THE LIBRARY LINK |
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| SCRAPBOOKING!!! While it is far from her defining characteristic, Luty's own disability -- Epidermolysis Bullosa, a rare skin condition -- was the catalyst in the creation of Same Differences. "My difference made me aware of other people who were outside the so-called norm," she says, "and of how often we exclude different people without even thinking." Please visit her website at http://www.same-differences.com/ |
| SOME EB CELEBRITY SUPPORTERS |
| STEVE YOUNG |
| JAMES MCDANIELS |
| DAVID & COURTNEY COX ARQUETTE |
| SCOTT WOLF |
| CUBA GOODING JR. |
| Courteney Cox's new makeup, Coco Eye Shadow Palette, named for Cox's toddler daughter, the Coco palette by Cargo features light pink, baby blue, gold, quartz and maroon colors selected by the actress. The makeup is available for $28 at Sephora stores and sephora.com. One hundred percent of the proceeds will be donated to an Epidermolysis Bullosa Foundation, to fight the rare genetic skin disorder. |
| READ ARTICLE IN THE CHICAGO TRIBUNE |
TEAM AVA'S WINGS
| EB.com walks for Miles for Miracles 2005 EverlastingButterfly.com participated in the Miles for Miracles Walk as team " Ava's Wings". We had 19 team members that completed the 7 mile walk around the Charles River. As a team we raised over $2000 for the children who depend on CHB. Along with the fund raising, our other goal was to spread awareness about EB. Our shirts had our website with the hope that curiosity alone will bring others to learn about EB. We also purchased EB Awareness bracelets for all our team members to wear. Again hoping that curiosity on there meaning would increase awareness. We also posted an awareness card on a memorial board with Ava's picture.There are so many children in need of our help and every person that participates whether they donated, raised money and walked, or just spread the word made a difference. We thank everyone for their support, and look forward to doing it again in 2006. You can read more about Miles for Miracles by clicking on the Rabbit and Turtle logo above. Thank you for your support Please visit out teams fundraising page at |
| Team Ava's Wings raised over $2000 dollars for Miles for Miracles |
| GOAL $550,000 THIS YEAR MILES FOR MIRACLES RAISED $70,000 OVER THE GOAL. $620,000 |
| CLICK ON THE PICTURES TO FIND OUT MORE ON THE KIDS AT HEART MARATHON PROGRAM AND THE CHILDREN'S MIRACLE NETWORK. |
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| WWW.EverlastingButterfly.com Yahoo Web Hosting |
| June 18th 2005. More than 2,300 walkers participated in Miles for Miracles, benefiting kids who rely on Children's patient care and research efforts. |
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MY FLESH AND BLOOD
Award winning documentary about a woman, Susan Tom, who cares for
11 special needs children. Directed by Jonathan Karsh, this films shows
how one woman is able to care & love for these children that present
many challenges. One of the children, Anthony, suffers from EB. The one
scene that really sticks in my head is the one where Susan states that EB
is the worse disease. Her experience really validates her opinion, and I
guarantee this video is worth every penny & will make an impact.
Troy Medeiros
Award winning documentary about a woman, Susan Tom, who cares for
11 special needs children. Directed by Jonathan Karsh, this films shows
how one woman is able to care & love for these children that present
many challenges. One of the children, Anthony, suffers from EB. The one
scene that really sticks in my head is the one where Susan states that EB
is the worse disease. Her experience really validates her opinion, and I
guarantee this video is worth every penny & will make an impact.
Troy Medeiros
Parents Cry Too
Lillian Sparks continued with
the story of Byron who suffers
from Recessive Dystrophic
EB. This is the follow up to
Tough Cookie.
Lillian Sparks continued with
the story of Byron who suffers
from Recessive Dystrophic
EB. This is the follow up to
Tough Cookie.
TOUGH COOKIE
The story about Byron Todd, who suffers from
Recessive Dystrophic EB. Parents Too Cry is
Lillian's follow up book to Tough Cookie.
The story about Byron Todd, who suffers from
Recessive Dystrophic EB. Parents Too Cry is
Lillian's follow up book to Tough Cookie.
| Epidermolysis Bullosa Official Patient's Handbook |
THICK SKINNED
A personal story about Dan Cogliano who was born
with EB. Dan overcomes many obstacles to attain
his goals, such as becoming an actor, a vice
president of Merrill Lynch, an athlete, and most of
all a husband and father.
A personal story about Dan Cogliano who was born
with EB. Dan overcomes many obstacles to attain
his goals, such as becoming an actor, a vice
president of Merrill Lynch, an athlete, and most of
all a husband and father.
THE BOY WHOSE SKIN FELL OFF
This documentary is about a 36 year old man, Jonny Kennedy, who had a
devastating genetic skin condition called Dystrophic Epidermolysis Bullosa
(EB). His skin literally fell off at the slightest touch, leaving his body covered
in agonising sores and leading to a final fight against skin cancer. Jonny
decided to document the last few months of his life and his death.
This documentary is not for sale, but has been aired on TLC.
Available through Debra UK. Video may not work in the US. US residents
should contact Debra of America for possible availability. www.Debra.org
This documentary is about a 36 year old man, Jonny Kennedy, who had a
devastating genetic skin condition called Dystrophic Epidermolysis Bullosa
(EB). His skin literally fell off at the slightest touch, leaving his body covered
in agonising sores and leading to a final fight against skin cancer. Jonny
decided to document the last few months of his life and his death.
This documentary is not for sale, but has been aired on TLC.
Available through Debra UK. Video may not work in the US. US residents
should contact Debra of America for possible availability. www.Debra.org
Good Night Christmas
a blend of traditional and religious
songs that will help you celebrate the
season
Jamie Gibson is an EB patient whose
love for music touched her life greatly.
Says Jamie: "The reason for the CD was
to make something that people could
get back after they make a donation to
the Epidermolysis Bullosa Medical
Research Foundation."
a blend of traditional and religious
songs that will help you celebrate the
season
Jamie Gibson is an EB patient whose
love for music touched her life greatly.
Says Jamie: "The reason for the CD was
to make something that people could
get back after they make a donation to
the Epidermolysis Bullosa Medical
Research Foundation."
Katora Janee is a 14 year old aspiring Gospel singer. To
read Katora's biography or to watch her new music video,
please click on the link below.
www.katorajenee.com
read Katora's biography or to watch her new music video,
please click on the link below.
www.katorajenee.com
Grace Catherine Peshkur was born on March 29th, 2002 with Recessive Dystrophic
Epidermolysis Bullosa. Along with caring for their beautiful daughter, the Peshkur family is
dedicated to making the last week of October, National Epidermolysis Bullosa Awareness Week.
Please visit Grace's Website @
Epidermolysis Bullosa. Along with caring for their beautiful daughter, the Peshkur family is
dedicated to making the last week of October, National Epidermolysis Bullosa Awareness Week.
Please visit Grace's Website @
| NATIONAL EPIDERMOLYSIS BULLOSA WEEK LAST WEEK OF OCTOBER |
Please let your EB constituency know that my multi-disciplinary EB clinic is up and running at Henry Ford Hospital Dermatology. At this point I am
holding it quarterly. As need grows we can make it more frequent. The following specialties are represented:
Dermatology,Plastic surgery,OT,PT,Nutrition,General pediatrics,GI,Pediatric Dentistry,and Social Work.
I would be happy to have any and all referrals.
Many Thanks,
Sincerely,
Tor Shwayder, MD, FAAP, FAAD
Director Pediatric Dermatology
Director Dermatology Residency Program
Henry Ford Hospital
Detroit MI 48202
holding it quarterly. As need grows we can make it more frequent. The following specialties are represented:
Dermatology,Plastic surgery,OT,PT,Nutrition,General pediatrics,GI,Pediatric Dentistry,and Social Work.
I would be happy to have any and all referrals.
Many Thanks,
Sincerely,
Tor Shwayder, MD, FAAP, FAAD
Director Pediatric Dermatology
Director Dermatology Residency Program
Henry Ford Hospital
Detroit MI 48202
NEW BE CLINIC OPENS AT HENRY FORD HOSPITAL IN DETROIT
A Monsta Midget Design
Upcoming Events
1st Annual Butterfly Ball -
February 21st, 2008
TomKats Square Dance - May
7th, 2008
Leather Works Motorcycle
Ride - June 28th, 2008
1st Annual Butterfly Ball -
February 21st, 2008
TomKats Square Dance - May
7th, 2008
Leather Works Motorcycle
Ride - June 28th, 2008
| SHOP AT DEBRA'S EB AWARENESS STORE!! |
| EBMRF receives 100% of your purchase of all CelEBrity Card packs. |
| GRANDMA GILLIE'S GREETING CARDS |
| BRIDGET MOYNAHAN |
| REESE WITHERSPOON |
| EVA LONGORIA |
| JENNIFER ANISTON |
| ORLANDO BLOOM |
| BRAD PITT |
| ADAM SANDLER |
| CELINE DION |
| Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, and everything in between. |
DebRA's NEW FAMILY
ADVOCATE PROGRAM
ADVOCATE PROGRAM
Jonny Kennedy (Paperback)
The Story of the Boy Whose Skin Fell Off
by Roger Stutter (Author), Nell McAndrew (Foreword)
The Story of the Boy Whose Skin Fell Off
by Roger Stutter (Author), Nell McAndrew (Foreword)
