Current Members in Our Guest Book
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Date May 27, 2002
Name Stephen Robertson
Email steve.robertson@imm.ox.ac.uk
Home Page
City / Town Oxford
State / County Oxon
Country United kingdom
Comments Dear Gill and family, Congratulations oo the establishement of a website to educate and inform on MNS. Well done! Our research effort is continuing to go well and before long I am optimistic we will get to understand more about the condition and what causes it. See my note on web site to see exactly what approach we are taking. Keep up the good work!



Date May 30, 2002
Name maryann priore
Email maryann.priore@cshs.org
Home Page www.csmc.edu/genetics/skeldys
City / Town Los Angeles
State / County CA
Country USA
Comments Very informative web page. I just sent this address to a current patient of ours.



Date June 19, 2002
Name Sarrah Scott
Email Sarrahw2Rs@aol.com
Home Page NA
City / Town Newport News
State / County VA
Country USA
Comments



Date June 29, 2002
Name Marina
Email marina81xxx@yahoo.it
Home Page
City / Town
State / County Italy
Country
Comments I'm an italian girl with the Melnick-Needles syndrome. I'm a friend of Ayme's family. Ayme is a very special girl, and her family is wonderful!! I would like to ask to all the people, who have seen the site, to contact the support group if you have some news or just if you know of other cases. This will be important for all of us! God bless you all (I'm sorry for my englih!) Marina



Date January 9, 2003
Name Paul de Wert
Email paulw@baxter.nl
Home Page
City / Town Uden
State / County NBr
Country Netherlands
Comments please refer to my email sent



Date October 21, 2003
Name Jennifer Bradley
Email jenniferbradley@lvcm.com
Home Page www.kid-power.com/brett.html
City / Town Las Vegas
State / County Nevada
Country USA
Comments My 5 year old son was just diagnosed by Dr. Wilcox at Cedar Sinai, with a cross between Melnick Needles syndrome and OtoPalatalDigital syndrome type 1. (It has been many years and 5 different geneticists to zone on on this diagnosis!) We were told there is now a test for the gene and should know in about 3 months if he truly has this syndrome. We are thankful for the website so we can learn more about it. (We've even spoken to Maryanne Priore in above reference) We would love to hear from other children with the syndrome.



Date February 26, 2004
Name Sarrah Scott
Email greenwitnv@juno.com
Home Page
City / Town Dinwiddie
State / County Virginia
Country United States
Comments I look forward to Aymie's progress, I made through my teenage years and yes, people can be cruel, because we are different, and have Melnick-Needles. I would like to further contact anyone who knows of corrective procedures. I feel pretty on the inside but not on the out, and I rarely ever wear shorts because of my legs structure. Keep up the site, and don't let anyone tell you otherwise....she's so cute!



Date March 4, 2004
Name Christina Scott
Email pooh_piglet86@hotmail.com
Home Page
City / Town Ebensburg
State / County PA
Country U S A
Comments Thank you for all the information you provided on this site and for sharing your family's story. This is the most infomation I have ever gotten on Melnick Needles. My daughter has this sydrom and we have been pretty much in the dark all these years. I would appreciate any and all information you can send me thank you Christina



Date April 11, 2004
Name Marsha MacInnis
Email keith.russell3@nf.sympatico.ca
Home Page
City / Town Stephenville Crossing
State / County Newfoundland
Country Canada
Comments My sixteen month old baby girl has recently been diagnosed with mns and I am seeking any feedback about the symptom



Date July 5, 2004
Name Marsha MacInnis
Email macinnismartin@hotmail.com
Home Page
City / Town Stephenville Crossing
State / County NL
Country Canada
Comments Our baby girl Caroline has MNS. We need to talk to some one. Please contact us or phone 709 646 5111.



Date July 19, 2004
Name Marsha and Martin MacInnis
Email macinnismartin@hotmail.com
Home Page
City / Town Stephenville Crossing
State / County Newfoundland
Country Canada
Comments Just wanted to touch base again. I was talking to Gill about her daughter who has MNS and she was most helpful. Hours after we spoke, my baby Caroline who also has MNS was hospitalized with breathing problems again. This time for three nights instead of the usual two week stay. She is doing fine right now, bit is on frequent ventolin masks. Please, anyone, contact the site if you have any info to offer or if you just want to talk.



Date September 1, 2004
Name Marsha, Martin & Caroline
Email macinnismartin@hotmail.com
Home Page
City / Town
State / County
Country Canada
Comments If anyone has the weight and height stats of their children affected with mns from birth to five years old or even close to this, could you email it to me if you don't mind sharing it with us. We just want to do a comparative view with our little Caroline's weight and height. Thanks



Date September 12, 2004
Name Aymie carter
Email
Home Page
City / Town
State / County
Country england
Comments hello.



Date October 4, 2004
Name Krystal young
Email krystal_young2053@hotmail.com
Home Page
City / Town sville xing
State / County NL
Country Canada
Comments



Date October 4, 2004
Name Krystal young
Email krystal_young2053@hotmail.com
Home Page
City / Town sville xing
State / County NL
Country Canada
Comments I believe this is an excellent site. i myself am doing a paper for my disabilities class and found this site most helpful in my search. i was inspired to do this condition because of a little girl in my community caroline, who has MNS. her mohter is very active with this site and i am proud to know her!mar if ur wondering how i know you, remmeber im danas friend



Date November 10, 2004
Name Heather Morrison
Email hmorrisonrosslaw@ripnet.com
Home Page
City / Town Smiths Falls
State / County ON
Country Canada
Comments Our daughter has been diagnosed. We are waiting on the blood tests to confirm. I look forward to receiving any information as it seems not much is available.



Date December 6, 2004
Name amanda russell
Email peachesandkeith@persona.com
Home Page
City / Town
State / County newfoundland
Country canada
Comments my neice Caroline has mns .her mother has been in contact with a couple of families but always welcomes anyone who could offer support or information, you can never get enough when it comes to something so rare.Caroline is having a down time right now we wish her well soon. she is the greatest love we have ever known..



Date January 18, 2005
Name Majo Matheu
Email flaca_matheu@hotmail.com
Home Page
City / Town Guatemala
State / County Guatemala
Country Guatemala
Comments Is great to have this space.... I just accept I have the syndrome....



Date April 4, 2005
Name Sam Seymour
Email samandfee@bigpond.com.au
Home Page
City / Town Fremantle
State / County WA
Country Western Australia
Comments We have been told that our 5 day old Granddaughter may have MNS having read what information we can get it seems more than likely that this diagnosis/possibility is close to the mark.No doubt we will be in touch with all of you soon.



Date April 9, 2005
Name Marina
Email marina81xxx@yahoo.it
Home Page
City / Town
State / County
Country
Comments



Date April 11, 2005
Name Tanja Strandlod
Email tanjaps@ofir.dk
Home Page
City / Town Copenhagen
State / County Denmark
Country Denmark
Comments Hallo! I'm a 24-years old girl who has MNS. I was diagnesed i 86 but has first today foundt this site. All my life I have seached for infomation exept for the last 4 years until today. I may have spent 4 hours infront of the computer just readind about MNS. I was happy to find your site.



Date May 24, 2005
Name Gill
Email
Home Page
City / Town
State / County
Country
Comments Hello to everyone who has signed our guestbook. I'm sorry if I haven't gotten around to replying yet, but we have had health problems in our family and have just recently suffered the loss of my Father and Aymie and Faye's Grandfather. I will contact everyone at some point soon, when things have settled down. Please do not think that you have been forgotten. If your call or enquiry is urgent, you can call the telephone number and leave a message on the answerphone. In the meantime, I thank you all for your patience. Gill. x



Date August 26, 2005
Name Adriene Taylor
Email adrieneangel@sbcglobal.net
Home Page
City / Town
State / County Missouri
Country USA
Comments My daughter has been diagnosed with MNS. She will be two years old 9-11-03 and your site has offered more information than any doctor in Missouri has been able to give me. Thank you. My daughter recently had a surgery called Mandibular Distraction to bring forth her lower jaw. She is now eating and breathing better. She is also gaining weight now. Thank you.



Date October 9, 2005
Name GRANGE Fabienne
Email fagrange@nomade.fr
Home Page
City / Town Paris
State / County
Country FRANCE
Comments Thanks you very much for your site. It was for me a revelation that i'm not alone to be affected by this symtome... Fabienne GRANGE - FRANCE - 367 avenue de la république 92000



Date March 2, 2006
Name Gill
Email carter0609@hotmail.com
Home Page
City / Town
State / County
Country
Comments having trouble with my email. you can reach me on this email address. anyne who has a message or question can reach me at this address or preferably speak to me 1-1 by telephoning me on 44 - 1424 - 217790 on Sunday 5th March 2006 after 11.00am. I will speak to as many of you as is possible. Gill.