Welcome to my nifty Dreambook, a free guestbook service from New Dream Network and the DreamHost!If you have a minute, please add your entry to those below by signing my Dreambook!
| Name: | janet |
| E-mail address: | janet@gmail.com |
| Comments: | I wanted to say thanks to Ekaka and divinity for everything so far. To everyone who doesn't believe or is considering a spell, I was one of those skeptical ones at first. I wasn't quite sure if I wanted to do this since I've tried other so-called spells caster and they did not work and was a waste of my time and money. However, when I read through the testimonials of other people at this website and after I talked to Dr. Ekaka who answered all my questions and was very nice about everything I decided to give it a try. I figured it would be my last try to get my husband back. So my story is that I was at my wits end when the guy I am in love with told me two months prior that he wasn't in love with me and never will be and that he didn't want to speak or see me again, especially since he was talking to this other girl. When I talked to ekakaspelltemple@yahoo.com he let me know which spells would be most appropriate for me and I chose the ones that was to get him back to me and stay with me and want to marry me. As soon as Ekaka started on the spells, my guy came back into my life! It was a miracle to me and I'm so thankful for that. Things have been going well, and pretty much according to what Ekaka said would happen. |
| Name: | Ian |
| E-mail address: | ian@shaw.ca |
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| Name: | phyllis |
| E-mail address: | 60501@optimum.net |
| Comments: | good morning. i 51 surviving with ebs. as i get older wounds are harder to manage. like other eb ssurvivors this debra site gives me the strength to live. compasion from all over the world is my survival key today. |
| Name: | phyllis |
| E-mail address: | 60501@optimum.net |
| Comments: | good morning. i 51 surviving with ebs. as i get older wounds are harder to manage. like other eb ssurvivors this debra site gives me the strength to live. compasion from all over the world is my survival key today. |
| Name: | Samuel |
| E-mail address: | samuel@yahoo.com.br |
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| Name: | Carol |
| E-mail address: | carol@bol.com.br |
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| Name: | Vernice |
| E-mail address: | Vonlawyer73@live.com |
| Comments: | I am a 37 year old single black mother who suffers with EBS. I have less than a high school education. I have been unsuccessful maintaining jobs I am qualified for because they require prolonged walking and standing. Unable to understand algebra and geometry I can't earn a GED. No one understands the shame and pain I feel everyday. I was denied disability but trying to appeal. More people need to be aware of the pain and difficulty living with EBS. |
| Name: | Jade |
| E-mail address: | jade@terra.com.br |
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| Name: | Inga |
| E-mail address: | iburinskaya@gmail.com |
| Comments: | It is symbolic that I found out about EB during its awareness week. My deep respect goes to all of you who fight this disease. The reason I am writing to you is as follows: only about a week ago my friend from a non-profit foundation caring for orphans in Russia (www.otkazniki.ru) has told me a story about a baby boy a...bounded by his surrogate and biological parents in Russia. His picture in a bank of pictures of rejected children at first seemed to show some kind of severe burns. The curator of the foundation found him in one of the Moscow hospitals. The personnel of the hospital did not know how to treat him because no one could diagnose his disease. Besides his symptoms he was underweight; he has also suffered multiple pneumonias and was bandaged with general application gauzes. Pain management was minimal. His doctor has admitted that she does not understand how he survived till now! But despite it all, he is alive! He even smiles at every adult who would show him any affection. During his short life, he had never been outside of his crib and did not see a single toy. The foundation called a pediatrician who diagnosed him with EB and it has hired a personal nurse (the hospital’s staffing is one nurse per twenty kids). He cannot, however, stay in hospitals forever. After some time he must go back to the orphanage to which he is assigned. Certainly he will not survive the transition (no one could possibly change his bandages and treat his wounds the way it should be treated on the regular basis in the typical Russian orphanage). The only way for him to live is to find a loving family. I know – I’ve read very carefully your stories and spoke with the nurse coordinator, the most wonderful Ms. Gery Kelly-Mancuso, - how much courage it takes to care for EB child, but also how much joy it brings to see her thrive! Therefore I am asking for your help, for the help of all EB community: please help us to find him the family! His name is Anton A. He was born on the 16th of January, 2010. He is blond with grey eyes and has a very calm and cheerful disposition. He was diagnosed with a dystrophic form of EB by Russian doctors. You can see his pictures and medical chart on my Facebook page. He will be available for adoption through an established American adoption agency. We have all the documents upon the request. He was delivered by a surrogate mother who had two children. His twin brother was healthy and picked up by their biological parents. Anton was not so lucky… Please contact me for more information. Please help him to survive! |
| Name: | Irene Kalulu |
| E-mail address: | reneek@edumail.co.za |
| Comments: | Hieim Irene and i have EB.I have been living with the condition for 27 years now and its been a struggle.More because i am black and living in a African community where nothing is known about the disease and there has been much finger pointing on who is to blame.With others thinking that it is as a result of witchcraft.I just recently discovered this website and it was a relief to learn that iam not alone.At the same time it was depressing to learn all that i have learnt regarding the disease.I have been told that there is no medicine for the disease.I have lived my life fully,i am a qualified Journalist though the disease has been an obstacle in so many ways.I have so many dreams i want to achieve but i wonder if i will be able to .I still feel so alone because no one understands what i go through and the frustrations i have.But i want to do something to make a change. |
| Name: | Shawna |
| E-mail address: | brownsugar351@aol.com |
| Comments: | Hi, My name is Shawna and I am 38 years old and have Epidermolysis Bullosa. i am also haveing a hard time the older I get dealing with my condition. I am having reactions to things such as soda and sweet tea and cant understand why. I have been to a urologist internist and gastro dr only thing thay have found is colitis. I have a high urination rate up to 24 times a day. I have also got to have my esophogus dialated every ten weeks to keep from choking on my food. The pain i experiance at times is unbareable am in bed days at a times sometimes. The things that are bothering me the most is i feel brushed off by some doctors. At this point i do not know what to do.Its very difficult for me cause I do not think ,though iv seen some good reccomended doctors, some have a clue as to how i feel . I have tried so hard to get them to understand my problems and pain are very different from that of the normal completely healthy person. Do any one have any suggestions as to who could I see. I live in Waynesboro Mississippi and there are not many drs here that know a whole lot about what my disease is and hoew to care for me. sincerely, Shawna |
| Name: | Nikki Ivey |
| E-mail address: | lilliesmommy0407@live.com |
| Comments: | My name is Nikki Ivey and I grew up with 2 uncles that were born with EB. Cal passed when he was 31 from Kidney failure and Cliff was 40, he had skin cancer. They both lived very full lives and will be greatly missed. My hope is that one day there will be a cure because nobody sure have to grow up with the pain and discomfort of EB. I say a special prayer for all that are living with this disorder and hope that you all have a Merry Christmas. |
| Name: | Kate |
| E-mail address: | katesonia84@gmail.com |
| Comments: | I am the proud mommy of Amelia "Emma" who was "diagnosed" (not definitive) with Dominant Dystrophic EB. She was born 1/27/2009 with no skin on her feet and minor blistering on her hands, arms, and face. I am desperately trying to get in touch with parents that are experiencing the same situation and feelings that I am. If you are out there with a child that has EB please email me asap!! It would be greatly appreciated! To anyone else out there with this condition: God bless you all. I have learned so much from my daughter about the inner strength EB pushes people to have and you are all powers of example to me and I pray for the very best for every single one of you |
| Name: | Annette |
| E-mail address: | rbaker21078@peoplepc.com |
| Comments: | Hello , I love this web site,it makes me feel like im not alone. i have EB Simplex. I still pray that one day there will be a cure for this disease. I am 50 years old and it just gets worse every year. I cry for the children..and then i PRAY, PRAY, PRAY..thank you for this site, you are an angel.GOD BLESS ALL OF YOU.. |
| Name: | Delicia |
| E-mail address: | Butterflit528@aol.com |
| Comments: | I support you to the fullest. Helping make those that suffer from EB your main goal. Spreading awareness. Finding help in anyway you can to may there quality of life better. You all ROCK. You have hearts of gold and I hope I can help in some way! |
| Name: | Patrick J. Cunningham |
| E-mail address: | patsi.cunningham@gmail.com |
| Comments: | I am a 41 year old male who was born 12\26\67 with RDEB. The first 30 yrs. were pretty manageable painwise, but the last 11 have been getting progressively worse, with the latter year being just uninmagineable engrossed in such severe pain!!! My purpose, question, for writing this is to ask anyone out there who is living with RDEB, is there any pain meds that work better than others, currently I take a liquid form of OXYCODONE that is quickly losing its effectiveness with me, and the pain is spiralling out of control quickly!!!! If anyone can offer me any advice, please dont hesitate to email me your recomendations, i am in a state of losing my grip on life because of how bad this pain that i endure every day is!!!! Please help1111 |
| Name: | Master. C.V. Sai Ganesh Varma |
| E-mail address: | g.sai43@yahoo.com |
| Comments: | I am Sai Ganesh Varma patient of EB Dystrophic (Autosomal Recessive Type). Kindly let me know the latest information regarding this disease. Thanks for giving me this oppurtunity to contact you. Sai Ganesh Varma S/o C.V.R. Varma H.no. 8-1-52/7, Teacher's colony, Mahabubnagar, 509 001 A.P. State, INDIA. |
| Name: | Valerie Davenport |
| E-mail address: | valeriesmonte@yahoo.com |
| Homepage URL: | http:// http://www.yahoo.com |
| Comments: | My first son Andy was born December 18, 1982 with what we would learn after much searching by doctors was the most severe form of EB. He died on January 9, 1983 and still the doctors didn't know much about his disease such as the exact cause or how to take care of an infant with such a severe case of EB. I gave permission for doctors to take skin and tissue samples from Andys body to be sent to medical research facilities world wide to try and discover more about this awful disease. I hope my sons contribution in this research helps others. |
| Name: | katrina |
| E-mail address: | trina15_@hotmail.com |
| Comments: | may all your wishes come true. You rock SAM! Love, miss Katrina |
| Name: | Viola Delhagen |
| E-mail address: | violadelhagen@yahoo.com |
| Comments: | Hello My boyfriends daughter just had twins less than 1 month ago and one of them was diagnosed with jeb. I am trying to research all I can and maybe get the mother some help. She is due to go back to work at the end of the month but I am not sure how she will take care of everything. She has an 8 and 5 year olds along with the twins 1 girl and 1 boy, the boy Jacob has the JEB. If anyone has any information or advice I am open to anything. Thanks and God Bless |
| Name: | ilker bıyık |
| E-mail address: | munzevi76@hotmail.com |
| Homepage URL: | http://epidermolysisbullosa.blogcu.com/ |
| Comments: | hello. my name is ilker biyik. I am male turkish teacher at the high school with eb. I want to correspond with people like me. thank you... |
| Name: | ilker bıyık |
| E-mail address: | munzevi76@hotmail.com |
| Homepage URL: | http://epidermolysisbullosa.blogcu.com/ |
| Comments: | hello. my name is ilker biyik. I am male turkish teacher at the high school with eb. I want to correspond with people like me. thank you... |
| Name: | Lisa Johnson |
| E-mail address: | princess_lisa@att.net |
| Homepage URL: | http://myspace.com/alonebutblessed |
| Comments: | You are all in my prayers! |
| Name: | Angi Smith |
| E-mail address: | dasmith-2@msn.com |
| Comments: | Hello, I am Gena's sister Angi. I hope that in the near future through our efforts no parent has to learn of the devastation of EB. |
| Name: | Rich Morrow |
| E-mail address: | rpmstock@yahoo.com |
| Comments: | To all those who have been touched by EB in one way or another my thoughts and prayers go out to you. May you find the courage and strength to endure the hardships and cherrish the precious moments... a smile or a laugh...Remember smile and laughter are the best medicine for the soul. |
| Name: | Lester Fairchild |
| E-mail address: | ldf1958@yahoo.com |
| Comments: | A local family has a 2yr.old who has RDEB. I am no one but to GOD myself. I have enough faith that there is already a possible help,it does not consist of man made drugs but possibly a simple mixture of fruit. UNDER THE BLOOD OF JESUS. AMEN!!!!!!!!!! |
| Name: | Catherine Godwin |
| E-mail address: | cwg1@hvc.rr.com |
| Comments: | My heart goes out to all the children and their caregivers -I only discovered this disease after seeing the Documentary called Flesh & Blood (about a woman who adopted several children w/ disabilities; one sweet boy had EB) You are all be in my prayers |
| Name: | b.see |
| E-mail address: | bseeodin@aol.com |
| Comments: | May God Bless All... I have been praying in faith . |
| Name: | Becky Holmberg |
| E-mail address: | holmgirl@ptd.net |
| Comments: | Hi all. I am a pediatric home care nurse who just observed what EB can do yesterday. I am a nursing supervisor and my company received a referral for a new client... a 3 wk old little girl diagnosed with EB. I went to the NICU to to observe the dressing change. I had no idea how all encompassing her care would be until I saw it. My greatest admiration goes out to her parents (who make a wonderful team) and all of you out there who deal with this this disease daily. God bless you all. I am not sure if my agency can take this case, as we all feel that we need to be sure we can adequately provide the staffing and help that this family needs. We don't want to do a so so job. Even if we don't pick this little girl up as our patient, I really would like to help. If you have any suggestions as to how I can help this family, please let me know. |
| Name: | Bobbie |
| E-mail address: | cjbsm@bigpond.com |
| Comments: | I am a 30 yr old mum of 2 children. Today I read the story of Xantha Maree Marshall a 6 week old baby with EB i did not know that there could be such a cruel disease. My niece is 6 and she suffers from severe eczema and I though that was awful but this diease is just heartbreaking. Goodluck and I hope that a cure caan be found for these poor childrens and their loving families. |
| Name: | Phyllis Queensland Australia |
| E-mail address: | PhyllisH16@bigpond.com |
| Comments: | I have been able to read you dream book & I am trying to raise some money for a little girl aged 6yrs in Victoria Australia her family are having the same struggle to have Eliza's Bandages & all that she needs to have her dressings put onto the Pharmaceutical Benefits Scheme approve as her parents are paying $3000.00 a month,I am a member of Queensland Country Womens Assosiation & we try to do many things to help people I am compiling a letter to raise some money for Eliza & her Family to see if it will lighten the cost of her treatment as well as getting other branches of our QCWA here in Australia aware that the dressing these children need should be subsidised by the governmenther family pay their taxes to this country & get nothing in returnThe Apex ,Lions Clubs & the Royal Childrens Hospital havegiven support but the other 20 families in Victoria that are serious families have not been so lucky. I get so upset that they will spend money on all the advertising about Drugs & Alchol & anti smoking which runs into Millions of Dollars but nothing for anyone who suffers with DebRA I write this withgreat emotion that maybe one day our Goverments will wake up to all this suffering in their own countries of all our future leaders may God lead them to a serious problem right in front of them & realise that Charity begins at home help them before you help other Countries that do not respect life of their country may your work in America be successful & I will keep trying for the children & Adults here in Australia let us hope that God hears our prays. |
| Name: | Colleen |
| E-mail address: | cool80@comcast.net |
| Comments: | I have a niece that has EB and right now she is having some rough times she is from PA and is in Fl being treated from doctor's there and getting the best help we love her so much and are praying that everything will work out for the best. |
| Name: | brenda eyler |
| E-mail address: | eylersgoldenstar@aol.com |
| Homepage URL: | http://myspace.com/vocalistbrendaeyler |
| Comments: | Just wanted to say my heart goes out to all of you...Your in my thoughts and prayers....Blessingz & HUgz~Brenda:) |
| Name: | Apollo Creed |
| E-mail address: | jesusluvsyew@hotmail.com |
| Comments: | Hello, first of all, I would like to say how brave you are. I commend you for that. My wife and I have talked about this condtion in great detail as we plan on having a baby some day and we have come to a mutual agreement that if our child has this condtion we will terminate the pregnancy if at all possible. It is not what we want to do, but we are thinking about our child. We don't want him/her to go through all that pain and suffering, they will never have a normal life. It is not worth it. I hope others will see this as a possible option and consider both sides of coin. THANK YOU! |
| Name: | Patty |
| E-mail address: | kotic5@comcast.net |
| Comments: | My son Antonio has rdeb, he is six years old and doing well. Thank you for all of your efforts. They are greatly appreciated. Sincerely, Patty |
| Name: | Dallas |
| E-mail address: | dpierce@heritagebuildings.com |
| Comments: | Good morning to you all. I am a 47 year old male with EB. As you can see I have survived to this point, but I am one of the lucky one's I suppose. I pray that there will be a break through soon to help the young children that suffer from this disease, it limits them in so many ways throughout their lives. Bless you all. Dallas |
| Name: | Franny |
| E-mail address: | Dancinchk2chk@hotmail.com |
| Comments: | Hello- I have read about this disease when a friend sent me an article about a young girl that lived in Colorado that had EB. I really want to sign the petition but when I clicked to go and sign,it said that the page didn't exist. Do you own a group where people can support you in this and maybe send you supplies of things you need that medical or the hmo's won't cover? I will keep you and your son in prayer. I found your site to be very informative. You son is a handsome fellow. |
| Name: | Arwen |
| E-mail address: | tiggerarwen@yahoo.com |
| Comments: | God bless you all that are going through this. I pray every night that a cure will come your way very soon. I am doing a school project and your web sight was very helpfull and informative. I learned of this disease only a few years ago and now i want to do all i can in support of all that have this, you are all beautiful and strong.. |
| Name: | jay jay |
| Comments: | to every one out there keep hope in your heart. there will be a day that it gets better my hopes and prayers go our to u all. |
| Name: | Leo Ducharme Jr |
| E-mail address: | bigdogduke69@aol.com |
| Comments: | I have EBS which I inherited from my father. I am now 36 and as I get older the wounds are becoming harder to deal with and more painful. My prayers are with the children dealing with this disease. |
| Name: | Catherine Cole |
| E-mail address: | littlelartson@aim.com |
| Comments: | To Samantha and her family. I wanted you to know that you are in my prayers. God bless. Love from my family and the choir. Your friend, Catherine. : ) |
| Name: | Joanna Mulder |
| E-mail address: | jmulder@knightdentalgroup.com |
| Comments: | To Marybeth and her family. I know I have not spoken to you guys in a while but my thoughts and prayers are always with you and your family. May their be a cure to help all. God bless you and your family always and keep up the good work on getting the word out. I love you all Joanna |
| Name: | JENNIFER MONTGOMERY |
| E-mail address: | jennifer_ellen_montgomery@yahoo.com |
| Homepage URL: | http://jennifer_ellen_montgomery@yahoo.com |
| Comments: | my friend's little boy has EB.... AND HE DOES REALLY WELL WITH FOR A 6 YEAR OLD AND MY TWO OLDEST ALL WAYS WANT TO RAPE THERE LONGS AND ARMS BECAUSE THEY WANTED TO ME LIKE HIM AND MAKE HIM FEEL GOOD AND HE WAS HAPPY THAT THEY DIDN'T MAKE FUN OF HIM BECAUSE ALOT OF KIDS OUT THERE MY KIDS AND LOVE THAT LITTLE BOY IS IS A AWESOME KID JENNIFER MONTGOMERY |
| Name: | Jaime Garcia |
| E-mail address: | jlcgarcia@verizon.net |
| Comments: | I am proud to be a supporter of this organization. I am going to do all I can to help spread the word of awarness. I couldn' t imagine what it must be like for these families. I do not know anyone personally but after seeing John Kennedy's story and reading some of the memorials and just everything that I could have possibly taken in, I have a very big and special spot in my heart to dedicate to this cause. I believe that everyone involved especially the families that must fight this battle are very couragess and get a standing ovation from me. You are truley warriors and are inspiration. You are the true meaning of HERO! God Bless you ALL! Fondly, Jaime |
| Name: | Theresa Jones |
| E-mail address: | Hotteetj@aol.com |
| Comments: | Hi thanks for the website. I never knew so many people had eb. I have eb. I am 50 years old. I never knew about debra until i saw the movie about the boy who skin fell off. Maybe one day a cure will be found. I know what eb patients and parents are going through. |
| Name: | Vicky L.Gash |
| E-mail address: | vickyndaryle@sbcglobal.net |
| Comments: | I want to say God Bless you all. I have never heard of these devastaing disease until last night when Jonny Kennedy's story aired on the TLC channel, it broke my heart. I haven't been quite able to get this out of my mind,and I looked up this disease and this website, and was totally heart broken. You parents and especially the children are beautiful people. I will do what I can to support you all. I would love very much to start a fund raiser program for this cause. God Bless each and everyone of you as well all the supporters. |
| Name: | stacey franco |
| E-mail address: | smf111854@msn.com |
| Comments: | This is a very informative website. Keep up the good and very necessary work. |
| Name: | hillary scarr |
| E-mail address: | hillaryscarr@hotmail.com |
| Comments: | Hi, I just wanted to say that your website has been a huge help for me while doing a school project on EB, I hope that Samantha and everyone are doing good. I will keep you in my prayers. Love, Hillary Scarr |
| Name: | CJ |
| Comments: | Thank you for putting together such a wonderful website. |
| Name: | julia |
| E-mail address: | wcierzynska@o2.pl |
| Comments: | serdeczne pozdrowienia z polski mam tez eb dystrophic jestescie wspaniali julia |
| Name: | Sherri Alvarez |
| E-mail address: | sherrialvarez@myway.com |
| Comments: | Your website is educational and lovingly put together. My husband and I are honored to be in the company of Samantha Sheridan and her wonderful family, and we offer our prayers and support to each of them. |
| Name: | Kristina |
| Comments: | My sister's friend just had a baby who was born with EB. Since then I've been trying to learn as much as I can, donate what I can, and give time by writing letters and signing petitions wherever they need be. I'm on the ebinfoworld.com news letter list and am just amazed at and in awe of so many people. God bless you all who are involved in getting the word out! |
| Name: | Diana Saver |
| E-mail address: | dsaver@earthlink.net |
| Comments: | Oh what a great job you are doing. It is my hope and prayers that this awful diesease will come to a end in the near future. We lost our beautiful granddaughter five years ago and tomorrow we hold a golf tournament in her memory so that we can give back. We will never forget our precious butterfly Caylin. |
| Name: | Mark Erickson |
| E-mail address: | swede116@juno.com |
| Comments: | Fantastic web site! I have EBS that I inherited from my mother. The children that suffer from EB are the real heroes in this story. Their courage is inspiring! Sincerely, Mark..51..St. Louis, Missouri |
| Name: | Marianne Morin |
| E-mail address: | morinmom@yahoo.com |
| Comments: | Wonderful site! We recently used it internationally when my son Joe with RDEB had a medical emergency in Peru. Lots of long distance phone calls and sharing of web sites occurred. The doctors there had not heard of EB. They needed a quick education. Thanks for all your hard work. |
| Name: | Whitney Connolly |
| E-mail address: | wgirl126@aol.com |
| Comments: | I am so happy to see all the effort that you all put in on a daily basis to help with a cure for EB. Your hard work and dedacation pays off. If there is anything I can do to help spead the awarness more please let me know. |
| Name: | Amy Van Scoy |
| E-mail address: | avanscoy@prodigy.net |
| Comments: | Hello..i am 28 years old and have EB simplex: Weber-Cockayne Subtype....thank you for all your hard work in raising awareness for all those inflicted with EB. amy :) |
| Name: | Kim Vernon |
| E-mail address: | kimvernon@earthlink.net |
| Comments: | My husband and daughter have EB Simplex. Thank you for all you are doing |
| Name: | Shirley May Jones |
| E-mail address: | rdebgrammy1@bellsouth.net |
| Comments: | Great work. As you know, Jennifer Kirk Deprizio, lived til she was 25 yrs. old. I know how much the bandages mean to keep the wounds clean. Keeping the wounds down and keeping the wounds clean is extremely important There is no cure for Epidermolysis Bullosa (EB). |
| Name: | Elena Azzarelli |
| E-mail address: | elalazz@aol.com |
| Comments: | May all you dreams come true! Love and prayers, Elena |
| Name: | Mary` |
| E-mail address: | lookin4u953@yahoo.com |
| Comments: | I am so glad to see this site. I am willing to help with whatever I can. Just email me. Mary from Michigan |
| Name: | Linda Osborne |
| E-mail address: | Osborne_L@cox.net |
| Comments: | Oh, thank goodness! Good luck. Don't give up. |
| Name: | Erika |
| E-mail address: | samuelsonny@aol.com |
| Comments: | I know I have said that I admire you and all the wonderful things that you do. I know that with God by your side and the others of EBAN, It will be a great success!!!!! Looking forward to watching it grow and helping in any areas that you know I could be helpful in. GOOD LUCK with many prayers when you go next week for the bill!!!!! I know you will be heard!!!!!!!!!!!!!!!!!!! With our thoughts and prayers always. With love. Erika, Sonny, and Rachel |
| Name: | Deb |
| E-mail address: | davenportd@mindspring.com |
| Comments: | Dear Gena, I was so thrilled and touched when I heard of EBAN and the fact that you all decided to honor Lillian Barbrey, by bringing it public on her Birthday. She was the best Aunt, Godmother and Role-model a girl could ever hope for and I miss her every day of my life. Let the Colorado contingent of relatives know what we can do to help. We are nothing, if not impossible to ignore!!! Love and thanks to you, Silvia and and Marybeth and good luck on this wonderful endeavor. Love, Deb |
| Name: | Mohammad Usman Sadiq |
| E-mail address: | mohammad.u.sadiq@dot.ca.gov |
| Comments: | I have a son who has RDEB. You have provided THE GREATEST humane example by taking action to help the most desparate and direly in need EB families. I solute you for putting your pains aside to absorb the pains of all the EB sufferers in this great country. I thank you all from bottom of my heart and thank the Almighty for people like you!!! May Allah bless you for all your sincere efforts and hard work!!! |
| Name: | Helen Farley |
| E-mail address: | Helow143@optonline/net |
| Comments: | Great website Our families need all the help possible. God Bless your efforts. Our Princess grandaughter Grace has RDEB and you can visit her website at OurGrace.org. Please know we will continue to support you and help in any way. |
| Name: | Helen Farley |
| Name: | Cindy Ahern |
| E-mail address: | cindyahern@earthlink.net |
| Comments: | What a wonderful web page. Good Luck with it and may all your wishes come true for all you EBer's. I am the grandmother to Oxlee Rodriguez Jr. and I know what he goes through on a daily basis. If this web page helps just a little, it will all be worth it. My prayers are with all of you. |
| Name: | Oxlee Sr, Cynthia & Oxlee Jr. |
| E-mail address: | cynthia_m_rodriguez@msn.com |
| Homepage URL: | http://www.oxleesplace.com |
| Comments: | This is such a great thing to do for the EB community. Good things are bound to happen as a result of all of your dedication and hard work. You've got a whole group of people behind you - GOOD LUCK!! |
| Name: | Randal Roberts |
| E-mail address: | supertech@usa.net |
| Comments: | As a sufferer of EB Simplex, I just want to say, "Way to go !!!". |
| Name: | Stephen Allan Ashun |
| E-mail address: | stephen_samanpa@hotmail.com |
| Comments: | I thank God for what you lovely people are doing.A journey of a million miles begin wirth a step and you are in the right direction. Keep it up and God Bless All !!! |
| Name: | Robin Eckwerth |
| E-mail address: | rcknrob53@yahoo.com |
| Comments: | Gena, I know your mother is proud of you. Great job, any way I can help, just let me know. I have EB on my feet only and if we could find a cure, I just can't imagine. This is a very painful disease and we need lot of help. Looking forward to days ahead. |
| Name: | Xavier Allen |
| E-mail address: | regimental1@hotmail.com |
| Comments: | My Adopted Mother had this disease, and I miss her very much. She is the reason why I am at peace with the world and with my life. I will do all I can to assist any E.B. Organisation. X.L. Allen, Michigan |
| Name: | lynn daborn |
| E-mail address: | lyndilou2004@yahoo.co.uk |
| Comments: | wishing you good luck with your new site, and thanks for all the hard work you do |
| Name: | Julie, Jay, Brandy and Richelle Johnson |
| E-mail address: | shodow@gte.net |
| Comments: | Hello all from Mount Vernon Washington |
| Name: | Delicia Swarr-Bolin |
| E-mail address: | Butterflit528@aol.com |
| Comments: | This is going to be great! Thanks so much and good luck with everything! |
| Name: | Fiona Candlish |
| E-mail address: | FCandlish@comcast.net |
| Comments: | Great job, Silvia. I wish you much success with EBAN. Fiona |
| Name: | Sara Denslaw |
| E-mail address: | sdenslaw@yahoo.com |
| Homepage URL: | http://www.thedenslaws.com |
| Name: | Susan Tom |
| E-mail address: | momnshoe@yahoo.com |
| Comments: | WOW!!! This is awesome. Thank you so much for everything each of you has done and what you WILL accomplish in the future. Great job. |
| Name: | Sally |
| E-mail address: | rscontreras@mindspring.com |
| Homepage URL: | http://www.freewebs.com/contrerasmata |
| Comments: | As I said...all I kept repeating was awesome awesome awesome over and over again! GREAT!!! |
| Name: | Gena |
| Comments: | Thanks for all your hard work on the website, Silvia! You ROCK! |
| Name: | Silvia |
| E-mail address: | ebmom@sleepingangel.com |
| Homepage URL: | http://www.ebanusa.org |
| Comments: | Thank you for visiting EBANusa.org! |