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Forum Closing - Site will become a 'read-only' database.
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Thread: Forum Closing - Site will become a 'read-only' database.

  1. #1
    Staff Advisor & Tech Support
    Join Date
    February 15, 2004
    Location
    Indiana
    Posts
    9,232

    Forum Closing - Site will become a 'read-only' database.

    Hi everyone,
    The forum will be closing its doors by the end of the year.

    As many of you know most of our membership is now using Facebook. If you have a Facebook account use your search bar and type in MPS or ML and you will find several private groups that you can join.

    For those who do not wish to open a Facebook account, please visit the National MPS Society (U.S.) to learn more about your child's illness.

    For now I'm turning off the registration button since new members are still trying to join. It's not fair to new parents who join, ask questions, and do not get the response they need.

    At the end of the year I will be turning off the ability to add any new posts or topics. The forum will remain a 'read-only' database for the time being.

    Thank you to everyone who made this site their home for the last 14 years.



    Jessica
    Last edited by Jessica; January 1st, 2015 at 10:14 AM.
    Leave room in your heart for Angels to dance.
    This forum is maintained in loving memory of our daughter
    Kaitlynn Marie Wellman - April 3, 1991~August 9, 2004

    Find me at: JWellman Designs
    or on Facebook at /jwellmandesigns

  2. #2
    Forum Helper - Moderator
    Join Date
    April 14, 2009
    Location
    Springfield, Illinois
    Posts
    2,271
    Thanks for all of your hard work Jessica that you and others have put into the site. I have learned so much about Jake's disease because of the forum and have made so many invaluable friends. I will be forever grateful that this site existed almost 6 years ago when we got the diagnosis! I love my forum family.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  3. #3
    Senior Member
    Join Date
    January 19, 2011
    Location
    Switzerland
    Posts
    102
    Das ist traurig.
    Eine andere Möglichkeit, weniger mit betroffenen Familien auszutauschen.
    Es ist nicht einfach, um Informationen zu bekommen. Deshalb war ich sehr glücklich hier im Forum. Obwohl ich nicht die Sprache zu sprechen ...
    Ich habe hier schon viele Male mehr Erfahrung blieb und erhalten Sie Informationen, wie der Ärzte. Dennoch - Dank für alle.
    send greetings
    orphan
    with son 2004 (mpsIIIa), son 2005 and daugther 2010

    Stell' dich täglich dem Wind, dann trotzt du dem Sturm. Geh' lachend durch den Regen, und du überwindest die Flut.
    You fight the wind, then you defying the storm. Go through the rain laughing, and you overcome the flood.

  4. #4
    Forum Committee - Moderator
    Join Date
    October 4, 2004
    Location
    Upstate NY
    Posts
    4,496
    I am heartbroken that our Forum home will be closing, but it seems that everyone has moved on. I am so grateful that the Forum was here through Logan's diagnosis and all of the years since. I know that the information I gained here saved his life on more than one occasion. Nothing will ever replace our island. Thank you, Jessica, for all you have done to help our MPS family. I am glad that the forum will remain as a database. There is so much valuable information here.
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  5. #5
    Forum Helper - Moderator
    Join Date
    July 6, 2011
    Location
    Sydney, Australia,
    Posts
    938
    Just popping in to say my farewell. This forum was a life saver for me when Shannae was diagnosed.

    Thank you Jess for all the work you put in over the years. Life moves in seasons, and I guess the season for this forum is over, but Jess, please remember that you were used by God in a mighty way over the years. With much love and appreciation,

    Sandi
    Sandi

    Mum to
    Shannae MPS1 - Hurler Scheie, 6 years old, diagnosed June 2011
    Talia, 7 years old, unaffected

    Our blog Around The Bend

  6. #6
    Forum Helper - Moderator
    Join Date
    October 26, 2010
    Location
    Sydney, Australia, Australia
    Posts
    635
    So sorry to hear this, the forum was absolute support for me when Sam was diagnosed, and for years to follow. Thank you all for your support and love through our journey. I have cried so many tears over our forum family, learnt so very much and become stronger for it. i will never forget the losses I have grieved here Georgia, Stephanie, Bam Bam, Jaeda, Jazzy, our dear Elizabeth, and too many more. I wish this forum was as active as it once was, and that it could live forever for us and new families that need it so, but have learnt that we can't have what we want in this world. Merry Christmas my forum family, wishing you all the very best for the new year
    Annmarie Gauci, Mum to
    Sam, 8 with MPSIIIA
    Little brother Tom, 5 just cheeky

  7. #7
    Senior Member
    Join Date
    February 23, 2004
    Location
    Marysville, Washington
    Posts
    862
    I'll admit it has been years since I have posted with all the new forms of social media and life just simply being BUSY but thank you SO MUCH for this site Jessica!!! It literally got us through our early days with Jacob. Not sure I could have done it all without my Forum family. ❤

    Just noticed my signature...wow...Jacob is now 14 and 12 years posted CBT, Matthew is 13, and Noah is 8!!!
    Melanie Irish
    Mommy to:
    Jacob age 10 (8 years post CBT for MPS 1 - Hurler Syndrome), Matthew age 9 (carrier), & Noah age 4 (carrier)
    http://www.caringbridge.org/wa/jacobirish

  8. #8
    Forum Committee - Moderator
    Join Date
    February 26, 2004
    Location
    Baltimore, Maryland
    Posts
    4,835
    Thank you Jessica, Todd, and Aunt Rhonda for all being there in the beginning when internet was so new and a snails pace too. It was the only place one could connect with like families. I could log in to the internet and the go fix breakfast before the connection would be complete many times Such insight you had Jessica for bringing families together. Since the days of social media texting, and so on, It seems that actually sitting and reading a forum kind of got lost. I think the life here at home has changed too with an aging child and having to work outside the home to make ends meet has also allowed for less sit down times to browse the topics. I have met many a good friend thru the forum and moms who will be life long friends forever. Thank you for supplying us with this resource. So many of us have walked life together hand in hand as we watched some kids flourish for a short time, while others go on to be angels. . You have brought so many together and that I will be forever grateful.
    God never gives me more than I can handle, though at times I wish the load was lighter :-)
    Love to you all!


    Patty and Jesse
    MPS III A


    http://www.caringbridge.org/md/myjesse < click here for Jesse's website

  9. #9
    Words can't adequately express my gratitude for this forum. This group is one of the first things that come up in a search for MPS disorders. Home for only a few weeks with my newly adopted child, this forum not only comforted me, but gave me wisdom, and ultimately helped get Zachary a diagnosis.

    From on the bottom of my heart...thank you!

    Much love and appreciation,
    Heather
    mom to Zachary, age 8 1/2 MPS IIIC & Emma age 11 1/2 , super sibling!

  10. #10
    I am sitting with tears, what fun we have had,through the good and bad. Thank you Jessica.
    Hugs From Shaun mom to.
    Heather 20 and Married to Ethan
    Zach 19 MPS1-ERT
    http://www.caringbridge.org/or/haynes/

  11. #11
    Staff Advisor & Tech Support
    Join Date
    February 15, 2004
    Location
    Indiana
    Posts
    9,232
    Thank you everyone!

    I have enjoyed getting to know each of you over the last 14 years. The forum will be greatly missed.

    Much love to all...

    Jessica
    Leave room in your heart for Angels to dance.
    This forum is maintained in loving memory of our daughter
    Kaitlynn Marie Wellman - April 3, 1991~August 9, 2004

    Find me at: JWellman Designs
    or on Facebook at /jwellmandesigns

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