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Currents THE QUARTERLY NEWSLETTER OF THE DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA SUMMER 2008 New EB Classification INSIDE: Letter from the Executive Director .......2 Ask the DebRA Nurse Educator .......3 10th Annual Mats WilanderTennis & Golf Classic .....4 MarkYour Calendar .......5 Butterfly Kisses for Ellie ........6 Supplies to Share ..........8 Shop for a Cause .........8 JGS Fund .......9 EB on Video . . .10 Families Reach New Height and New Hopes in Denver .......11 EB Awareness Store .......Back The Classification of Inherited Epidermolysis Bullosa (EB): Report on the Third International Consensus Meeting on Diagnosis and Classification of EB. Jo-David Fine et al. In the last eight years, the advances in science that address the spectrum of inherited Epidermolysis Bullosa (EB) have been substantial. On May 19, 2007, 18 leading authorities met to review the classification system of EB and update it to reflect current knowledge.The findings of this meeting were published in the American Academy of Dermatology in June 2008. This Consensus meeting resulted in an expansion of EB's classification to include other disorders associated with mechanical fragility of the skin. Kindler Syndrome is now classified as a fourth subtype. Kindler syndrome is an autosomal recessive disorder involving kindling, and the cleavage plan varies in these individuals. The Junctional subtype was expanded to include laryngo-onycho-cutaneous syndrome Level of skin Major EB Known targeted cleavage type protein(s) Intraepidermal EBS Keratins 5 and 14; plectin; (“epidermolytic”) * 6β4 integrin; plakophilin-1; desmoplakin Intra-lamina lucida JEB Laminin-332 (laminin 5); (“lamina lucidolytic”) type XVII collagen; * 6β4 integrin Sub-lamina densa DEB TypeVII collagen (“dermolytic”) Mixed Kindler syndrome Kindlin-1 continued on page 7 The following article is extremely technical. A number of families expressed interest in the re- classification of EB and as a result, Dr. Jo-David Fine provided the most up-to-date information. Dr. Fine’s book is available for pre-order on Amazon.com. It can be found by typing his name into the search engine.

THE QUARTERLY NEWSLETTER OF THE … THE QUARTERLY NEWSLETTER OF THE DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA SUMMER 2008 INSIDE: NewEBClassification Letterfrom

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CurrentsTHE QUARTERLY NEWSLETTER OF THE DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA

SUMMER 2008

New EB ClassificationINSIDE:Letter fromthe ExecutiveDirector . . . . . . .2

Ask theDebRA NurseEducator . . . . . . .3

10th Annual MatsWilander Tennis &Golf Classic . . . . .4

MarkYourCalendar . . . . . . .5

Butterfly Kissesfor Ellie . . . . . . . .6

Supplies toShare . . . . . . . . . .8

Shop for aCause . . . . . . . . .8

JGS Fund . . . . . . .9

EB onVideo . . .10

Families ReachNew Height andNew Hopes inDenver . . . . . . .11

EB AwarenessStore . . . . . . .Back

The Classification of InheritedEpidermolysis Bullosa (EB):Report on theThirdInternational ConsensusMeeting on Diagnosis andClassification of EB.

Jo-David Fine et al.

In the last eight years, the advances in sciencethat address the spectrum of inheritedEpidermolysis Bullosa (EB) have beensubstantial. On May 19, 2007, 18 leadingauthorities met to review the classification

system of EB and update it to reflect currentknowledge.The findings of this meeting werepublished in the American Academy ofDermatology in June 2008.

This Consensus meeting resulted in anexpansion of EB's classification to include otherdisorders associated with mechanical fragility ofthe skin. Kindler Syndrome is now classified as afourth subtype. Kindler syndrome is anautosomal recessive disorder involving kindling,and the cleavage plan varies in these individuals.

The Junctional subtype was expanded toinclude laryngo-onycho-cutaneous syndrome

Level of skin Major EB Known targetedcleavage type protein(s)

Intraepidermal EBS Keratins 5 and 14; plectin;(“epidermolytic”) *6β4 integrin; plakophilin-1;

desmoplakin

Intra-lamina lucida JEB Laminin-332 (laminin 5);(“lamina lucidolytic”) type XVII collagen;

*6β4 integrin

Sub-lamina densa DEB Type VII collagen(“dermolytic”)

Mixed Kindler syndrome Kindlin-1

continued on page 7

The following article is extremely technical. A number of families expressed interest in the re-classification of EB and as a result, Dr. Jo-David Fine provided the most up-to-date information.Dr. Fine’s book is available for pre-order on Amazon.com. It can be found by typing his nameinto the search engine.

$2 • SUMMER 2008 DebRA CURRENTS

LETTER FROM THE EXECUTIVE DIRECTOR

Summer isusually the timeof year when thepace slows. Notat DebRA!At the end of June, DebRA held itsbiennial Patient Care Conferencethemed “NEW HEIGHTS, NEWHOPE” in Denver, Colorado. Throughthe gracious support of sponsors,volunteers and an anonymous angel, wewelcomed 275 adults and 44 childrenand 23 speakers to the beautiful DenverRenaissance Hotel. Registration spikedonce it was announced that Dr. JohnWagner of the University of Minnesotawould be a guest speaker.

DebRA’s PCC IS THE ONLY FREENATIONAL CONFERENCE FOR EBFAMILIES. Yet in these days of high gasprices, and a “tight” economy manyfamilies fund-raised in their localcommunity to pay for travel expense.The opening reception was a greatopportunity to see old friends andmake new ones. Lunches each dayreunited parents and kids who had tobe pried from the fabulous Kids Roomstaffed by volunteer nurses, siblings andlocal Denver residents who just “wantedto help” make the experience specialfor our EB kids. Without strongsponsorships, this conference would notbe possible. We are grateful to HolllisterWoundcare, our Title Sponsor,Mölnlycke, our Gold Sponsor andNational Rehab, this year’s SilverSponsor. We welcomed ByramHealthcare, Direct Medical and TTW as exhibitors.

DebRA provided a binder for eachfamily with agenda, speaker biographiesand topic information. The city provideda very complete guidebook—though

we kept everyone very busy during theday. Macy’s provided discount coupons.

Conference Feedback is important to DebRA. This year we will useSURVEY MONKEY(WWW.SURVEYMONKEY.COM) forfeedback, and to learn more about whatis important to EB families. It will guideus in many ways beyond conferencefeedback. It will guide our work andbetter serve your needs. Please taketime to complete it and return it toSurvey Monkey. Individual responses areanonymous.

Our friends at National Rehab fullyfunded taping all the Conferencesessions. The four DVD set will beavailable free through DebRA’s websiteand National Rehabwww.nationalrehab.com . We arelooking at a six-week turnaround time.It is the first time the Conference willbe available to everyone—indexed onthe DVD set to take you to theinformation you need. Terrific!

MARK YOUR CALENDAR forMONDAY, OCTOBER 20TH, 2008 forthe TENTH ANNUAL MATSWILANDER GOLF AND TENNISEVENT at the Westchester CountryClub. It is Debra’s major fund-raisingevent. There is always room for talenton the Event Committee to secure theperfect auction items, fill the foursomes,play tennis with the greats, all followedby a wonderful dinner and dancing.Roger Stern has graciously agreed tochair the event. Our corporate honoreeis Ron Duckstein—a wonderful DebRAsupporter. We are also delighted tohave a Spirit Award winner we met atthe Denver Conference. We actuallymodified the Conference schedule soeveryone in Denver could meetJassamine. She is a very special youngwoman. Watch for the invite.CONSIDER BECOMING A SPONSOR.

DONATE. VOLUNTEER. We need allof you to make this event the best ever.If you would like an online version ofthe invitation, visit our website atwww.debra.org. We all have contacts,are members of social and professionalgroups. Copy the link and send it toyour network.

We have been SEARCHING FORNEW OFFICE SPACE. We have a leasein the works, so wish us luck! Otherprojects include re-branding DebRA tobetter illustrate the quality of the workwe do in patient/family support andresearch. I believe we have a great storyto tell, and should be proud of what wehave accomplished and our vision forthe future.

I am very happy to be apart of the DebRA familyand the EB community. Iwelcome your ideas andinput. My email [email protected] stay in touch.

Warm regards,Mary

Mary Sprague

$DebRA CURRENTS SUMMER 2008 • 3

• Ask the DebRA Nurse Educator •Dear DebRA Nurse:

My firstborn child has a severe form of EB.Our genetic test results say it is a recessiveform and both my husband and I carry thegene mutation. I have been told that there is amethod, PGD, which can ensure I have an EBfree baby when I have our next child. Can youtell me how it works?

New to EB

Dear New:

Having the genetic mutation of your child's EBidentified is the first step in Preimplantation GeneticDiagnosis (PGD), improving your chances of having anEB free child.

PGD is accomplished with in-vitro fertilization, inwhich the mother takes hormones to increase thenumber of eggs she produces during her monthlycycle. These matured eggs are surgically removed andthen fertilized with the father's sperm. When the

fertilized egg reaches the eight cell stage, one of thecells is removed and analyzed at a special laboratoryto see if it carries the EB mutations that wereidentified in the family. The fertilized eggs that do notcarry the mutations can then be implanted. Ifpregnancy results from the implantation process, thechild will be EB free, but may also be a carrier like theparents.

This process has been used successfully in a number ofEB families. However, it is very expensive and notalways covered by standard health insurance.Successful pregnancy with live birth is achieved inapproximately one third of PGD cycles. As with anymedical procedure, you should discuss with yourmedical provider whether PGD is right for you.

Geraldine Kelly-Mancuso, RN

For more information on Genetics and EB, you can go to www.genetests.comand at GeneReview, search for Epidermolysis Bullosa. Currently there are articles by Ellen G Pfendner, PhD and Anne W Lucky, MD on EBS, DEB, JEB and EB-PA available.

EB Tips for the Summer Months• Sun-protective clothing is important for all familymembers, both with EB and EB- free.

• Ocean water and pool water swimming is okayfor those with EB.

• Spray on sunscreen is great because it is easy touse. Pick a brand intended for sensitive skin.

• Use very light-weight sunglasses that blockUVA/UVB—thin strips of a non-stick dressingcan be used behind the ears and at the bridge ofthe nose if necessary.

• Many families have success with water shoes, saltwater sandals and Croc’s—find the ones that fityour needs.

• Heat can cause increased blistering—many folkswith EB opt for air conditioning where available.

October 20th, 2008Westchester Country Club

Rye, New YorkINFORMATION 212-868-1573

The day begins with a delicious continentalbreakfast in the early morning followed by atennis clinic with Mats Wilander, JohnMcEnroe and a host of internationally-known tennis champions.

Mats and John will play an exhibition matchbefitting their world famous status in thetennis arena. There are also fast serve andshot-making competitions for tennisparticipants, as well as an afternoontournament.

Following an elaborate brunch and a mid-morning shotgun start, golfers join celebritieson the famous West Course for some of the best 18 holes on the PGA Tour.

After a full day on the courts and greens, our guests slip into evening wear for an elegantcocktail reception with a silent auction before heading inside to a three-course dinner anddancing to live music by New York City’s hottest dance band, The Stingers. This yearpromises to be as fun and exciting as ever.

10th Annual Mats Wilander Celebrity Tennis & Golf Classic

4 • SUMMER 2008 DebRA CURRENTS

continued on next page

Tenth Annual Mats WilanderCelebrity Tennis and Golf ChallengeMonday, October 20th, 2008

Westchester Country Club

Rye, New York

National EB Awareness Week October 25th–October 31st, 2008

Watch for updates on our website!

Mark Your Calendar

Jassamine Domino has been selected asthe 2008 Spirit Award Winner and willbe honored at the Mats Wilander Event.

EVENT JOURNAL ADVERTISINGAdvertising opportunities range from $250 for a business cardsize ad to $3,000 for a 4-color cover.

SPONSORSHIP OPPORTUNITIESSponsorship opportunties range from $350 for the sponsorshipof a tee or green to Platinum sponsorship at $30,000.

Ticket PricesGolf and tennis tickets include all day dining, reception and dinnerGolf Foursome........................................$2,750Golf Individual............................................$750Tennis ..........................................................$400Reception/Dinner only ..............................$250Corporate Table of 10 guests ................$2,500

FOR MORE INFORMATION, PLEASE CONTACT:DEBRA OF AMERICA, INC.5 WEST 36TH STREET, SUITE 404NEW YORK, NEW YORK 10018 212.868.1573 PHONE • 212.868.9296 FAX

Reserve and register at www.debra.org

DebRA CURRENTS SUMMER 2008 • 5

Tennis & Golf Classic continued from page 4

6 • SUMMER 2008 DebRA CURRENTS

DebRA would liketo thank the

generous sponsorsof Butterfly Wishes

for Ellie

Allstate InsuranceCompany

Doctors Marianneand Stephen Garber

John and DeanPhillips

Stuart Shapiro

The Goldstein Family

kk

kk

Butterfly Wishes for EllieThe 2nd annual “Butterfly Wishesfor Ellie” event on May 8th, 2008was a special evening for the EBCommunity. We had a recordturnout of over 150 people, raisedover $30,000, and spreadawareness. State RepresentativesSharron Cooper and MicheleHenson were our honored guestsand our champions in trying topromote an EB awarenessthroughout the State of Georgia.The funds raised for this eventbenefit DebRA of America andare being used for research andthe nurse educator program. Welook forward to continuing thisevent in the years to come.—ANDREW, SHAWN AND ELLIE TAVANI Ellie Tavani

k

The Atlanta Swing Orchestra Inc. performs, much to the delight of the guests.

k

DebRA CURRENTS SUMMER 2008 • 7

k

k New EB Classification continued from page 1(LOC or Shabbir's syndrome). LOC is anautosomal recessive disorder seen withincreased incidence in Punjab and involvesLaminin 332 ( formerly Laminin 5).

As stated by the Consensus group, “Therationale for our inclusion of selectednew entities as types of EB is (1) thatthey have friction-induced blisters andother clinical features in common withmore established forms of EB; (2) thatthey are hereditary; and (3) that, from apractical perspective, the patients,especially neonates, and their families, willpotentially benefit from the growingresources already available for EBpatients.” Page 941

The Consensus group also reviewed thetesting methods and findings for EB withineach. In regard to DNA testing, the groupstated “mutational analysis remains asuperb research tool. In addition, theeventual application of gene therapy toEB patients will be dependent on thedetermination of the specific mutationspresent. It is also the recommendedtechnique whereby prenatal andpreimplantation diagnosis can beperformed. At the present time, however,it is not considered to be a first-linediagnostic test for EB.”

Additionally, the nomenclature has beenadjusted in order to ensure uniformity inthe diagnosis of EB. The changes are

shown in the chart below.

The outcomes of the reclassifications ofother disorders as part of the EBspectrum along with clarification in thenomenclature of EB diagnoses will resultin more consistency across medicaldisciplines.

This is a review of only a small portion ofthe Classification review. The paper hassummary tables about the relativefindings, both cutaneous andextracutaneous, for each subtype listedwithin the new classification scheme. It ishighly recommended that those with aninterest in EB review the full article.

Name Recommendation Reason(s)

EBS, Weber-Cockayne Change to “EBS, localized” Lack of uniformity in original descriptions; new name has more immediate visual impact

EBS, Koebner Change to “EBS, Inconsistency in definition even among EB experts; generalized other” not associated with Koebner phenomenon

EB with pyloric atresia Separate into “EBS-PA” Pyloric atresia may occur rarely with EBS, as well as and “JEB-PA” subtypes with JEB

Hemidesmosomal EB Eliminate this term Includes only one of two JEB-nH subtypes having identical EM and clinical findings; distinction is based solely on targeted protein

RDEB, Hallopeau-Siemens Change to “RDEB, New term has more immediate utility for clinicianssevere generalized”

RDEB, non-Hallopeau- Change to “RDEB, Consistency in nomenclatureSiemens generalized other”

Transient bullous Change to “bullous Not always transient; rare patients continue to blister dermolysis of the dermolysis of the beyond the newborn period or infancynewborn newborn”

DebRA staff would like to thank Dr. Jo-David Fine for his assistance in the preparation of this article.

8 • SUMMER 2008 DebRA CURRENTS

Need more up-to-date and accurateinformation?Visit our website at

www.debra.org

+Supplies to SHAREDebRA’s Wound Care Clearinghouse acceptsdonations of wound care products which arepassed on, free of charge, to people in need. Theseproducts are distributed on a first-come-first-servebasis, and supplies vary over time.

Contact DebRA at 212-868-1573 or send an email to [email protected]. Remember, if you havesupplies you no longer need and want to helpothers, please let DebRA know. We’re alwayshappy to receive donations of non-expired,unopened, non-prescription products to helpthose in need.

Have youremembered DebRA in your will?

Cards can be

purchased by calling

the DebRA office at

212-868-1573

and mailed to you at

no additional cost.

DebRA CURRENTS SUMMER 2008 • 9

Jackson Gabriel Silver Fund

DebRA recently had the opportunity to speak with Alex andJamie Silver, parents of 9 month old Jackson Gabriel Silver(RDEB). The Silver/Grossman family started a fund in conjunctionwith DebRA and the Dermatology Foundation that is devoted toproviding career development support for a junior investigatorpursuing research in the realm of EB, funding additional EBresearch and helping to secure top notch patient care servicesfor those in need, including support of the DebRA NurseEducator Program.

How did you become involved with DebRA ofAmerica?

JAMIE:We became involved with DebRA of America whenJackson was born. The hospital had never had a child with EBbefore, and we were told by some doctors to go to the DebRAwebsite and print out materials for them so that they couldfollow the protocol while he was there.

ALEX:We then reached out to the Executive Director andBoard President of DebRA who were both incredibly receptiveand got us a new parent kit…DebRA helped us make sense ofthe world that is EB which was new to us. We have foundDebRA to be a very supportive organization which is what hasled to our wanting to get involved on the fundraising side andhelping out with events as well as my joining the board. It’s anorganization we want to be a part of, not just a recipient of itsservices.

JAMIE: DebRA sent a wonderful box of supplies. Some of thematerials that they supplied for Jackson…were things that wedidn’t know of and proved to be very helpful to us those firstfew weeks we were home. I also send things to the WoundCareClearinghouse. The things that we received were so helpful.

Have you had the opportunity to take part in any ofthe services offered by DebRA?

JAMIE: We are in frequent contact with Geri Kelly-Mancuso(DebRA Nurse Educator), who has been a lifesaver. She calls tocheck in to see how I’m doing and Alex calls her often withquestions. What has been so nice is that Geri really seems tounderstand what it’s like to parent a child with these needs anddoes not say that there is one definitive right way. She’s veryopen to our need to do what feels comfortable and what’s bestfor our child.

ALEX:The other service I’ve used are the DebRA chatboards -there is a wealth of information that people share as well asupdates that I’ve found helpful especially about practical solutionsto everyday complications.

JAMIE: The Occupational Therapist who works with Jacksonwent to the Patient Care Conference (PCC). It was great forJackson that his OT learned from the doctors and families there.It really increased this understanding of current practicesespecially the newest research and different products.

Regarding your strong interest in research: are thereany current research projects that have stood out toyou recently in research?

ALEX: Overall, it’s really wonderful as a parent to see theamount of research going on right now. Its gives one a lot ofhope that there is light at the end of the tunnel. We are gratefulto those who spend their time trying to cure and manage EB.While we are clearly in the learning stages about variousresearch projects, one of the more recent projects we’ve lookedinto is Dr. David Woodley’s and Mei Chen’s project at USCwhich focuses on replacing the missing collagen VII in someonesuffering from DEB with an injectable form of Collagen VII. It hasthe potential to increase the quality of life greatly. Clearly thestem cell work being pioneered by Dr. Christiano at Columbiasounds very promising as does the work Dr. Wagner is leading atthe University of Minnesota on bone marrow transplants thoughit is in its early stages. Stanford has been focused on genetransfer, and we eagerly await learning more about their trial.Basically we are encouraged that some of the smartest peoplewe have met are trying to cure this disease.

We know that you funded the Jackson Gabriel SilverFund; can you tell us about its purpose?

ALEX: When we established the JGS fund in collaboration withEdward and Ronnie Grossman (Jackson’s grandparents), we did itfor two reasons; the first is to fund research to the best of ourability. Given EB affects a relatively small community, it is upon usand all of the other people affected by EB to push to find anultimate cure, or treatment. The JSG fund will fund a CareerDevelopment Award via the Dermatology Foundation. Thisaward will go to a top junior transitioning to senior researcherfor three years specifically to work on a cure or treatment for

Jackson Gabriel Silver

+

10 • SUMMER 2008 DebRA CURRENTS

EB ON VIDEO FREE VIDEO NOW AVAILABLE… More than Skin Deep

VHS Tape Format Only, 1999This 10-minute video features people with EB and parents of children with EB sharing theirexperiences, as well as brief EB information. $3.00 shipping and handling to US addresses. Contact [email protected] for more information.

COMING SOON… The Boy Whose Skin Fell Off DVDTo add your name to the waiting list please go to www.debra.org and click on the Order Video linkunder Jonny Kennedy’s photo. This award-winning documentary featured on TLC follows Jonny Kennedy, a man who hadRecessive Dystrophic EB and died in 2003 age 36 after losing his battle against skin cancer. In hislast months, Jonny decided to work with filmmaker Patrick Collerton to document his life anddeath, and the result was a film that is an uplifting and provocatively humorous story of a singularman. Not shying away from the grim reality of EB, the film was also a celebration of a life lived tothe fullest.

FREE DVD AVAILABLE… What is EB and Your Welcoming ClassroomA guide for making the school experience supportive and positive for students with EpidermolysisBullosa.

JGS Fund continued from page 11EB. The JSG fund will also fund other EBResearch. And second, it will fund patientcare. We have been fortunate to haveaccess to very good care with our sonfrom the beginning and that’s somethingthat should be open to every parent whohas a child with EB and being able to dothat is very important to us. DebRA hasbeen extremely helpful to us inadministering the fund and making itpossible for people to donate onlinedirectly to it.

As trendsetters highlighting adifferent kind of organized givingand using this opportunity toinspire others to follow yourexample, if someone comes to youwith an interest in establishing thesame type of fund, what advicewould you share with them?

Alex: Number one, you just have to do it.It’s actually much easier than it seems. Wewere helped greatly by DebRA whocouldn’t have made it easier for us.Number two, keep an open mind. Someof the best ideas we’ve heard have been

from other people…we listen and speakto everyone about research and patientcare. And number three; accept thesupport that people give to you. Thiswouldn’t be possible without the supportof our family, loved ones and friends. Itgives us a way to show that this is moneythat is going to go for two clear purposes,patient care and research, and it getspeople interested when you canspecifically point to something that youhave tangibly done. Number one, have aclear goal and also I suggest doing it withan established organization like DebRAgiving you instant credibility.

When people find out about the JGSfund, we hope they donate and tell otherpeople about it.

We think it’s also important topersonalize it. The reason we called it theJackson Gabriel Silver Fund is to showthat there is a living breathing personsuffering from this disease. We hope itprovides a sense of urgency to pushahead with fundraising and research inreal time.

JAMIE: This is a disease that affects such asmall group of people that if we don’ttake it upon ourselves to find treatmentand a cure then who is going to?

Is there anything else you wouldlike to share with the EBcommunity?

JAMIE: For me, knowing that there is anorganization like DebRA was such a hugerelief when Jackson was diagnosed; thatthere was a resource out there for us toutilize and that there were people outthere who would have knowledge aboutthis disease that we had never heard of. Ithink that for new families it’s a really hardadjustment. But I think that most familieswould agree how grateful they are tohave an organization such as DebRA.

Overall, it's really wonderfulas a parent to see theamount of research going onright now. Its gives one a lotof hope that there is light atthe end of the tunnel

DebRA CURRENTS SUMMER 2008 • 11

Families Reach New Height and NewHopes in Denver

More than 250 people visited Denver for DebRA's 2008 PatientCare Conference (PCC) entitled “New Heights, New Hopes”.Denver, the capital of Colorado, played host to the free biennialconference that featured presentations from leading authoritieson Epidermolysis Bullosa (EB). Denver was chosen as the 2008venue due to its strong connection to the EB communitythrough the EB Clinic at Colorado Children’s Hospital.

Mary Sprague, the Executive Director of DebRA, opened theconference with a welcome to all families and medicalprofessionals that traveled to attend this one-of-a-kind meetingof families and doctors from around the nation. The four-dayconference provided the unique opportunity for experts in thefield and families to come together to share information and anopen forum to ask questions. It also allows families to meet inperson and share their experience and suggestions with eachother.

The agenda covered topics including wound care, nutrition,research, physical therapy, entering schools, stem cell treatment,dental care and pain management among many others. NationalRehab generously offered to record the sessions and have madethem available to the EB community.

While the adults were immersed in the sessions, the children hadthe opportunity to spend time together working on projects andplaying in the Kid’s Room. It is due to the amazing volunteers.Their time and seemingly limitless amounts of energy kept theroom filled with laughter and the children entertained.

The PCC is free to all attendees and was supported in part,through the generosity of Title Sponsor Hollister Woundcare.Support provided by Gold Sponsor Molnlycke Healthcare andSilver Sponsor National Rehab also helped to make thisconference possible. In addition, the conference received generalsupport from Byram Healthcare, Direct Medical, Mr. & Mrs. MarkMcCaughtry, Pedors, Smith & Nephew, The Brotman Foundationand Wayne Westland Friends of EB.

The next Patient Care Conference will be held in 2010 with thedate and location to be determined. Details will be shared asthey are available.

This Conference would not have been possible without allof the Doctors, Nurses, and other wonderful medicalprofessionals and volunteers who worked so closely withus to make this year’s Patient Care Conference happen.We will never be able to thank you enough.

12 • SUMMER 2008 DebRA CURRENTS

DebRA of America, Inc.5 West 36th Street, Suite 404New York, New York 10018

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