MPS and ML Forums

Welcome to the MPS and ML Forums.

  1. Research Document Library Last Post

    1. MPS/ML Research Documents - Members Only

      This is a Library of the latest research documents viewable in PDF form. You must be logged in to view this area. Adding new topics has been disabled, however you can reply to article subjects after they are added by the staff. To submit a document please see instructions posted at the top of each forum.

      Sub-Forums:

      1. MPS I (Hurler, HS & S)
      2. MPS II (Hunter)
      3. MPS III (Sanfilippo A, B, C & D)
      4. General Articles
      5. MPS VI (Maroteaux-Lamy)

  2. MPS/ML Forum Topics Last Post

    1. Administrative Announcements

      Read here to view important announcements or updates about the forum.

      Moderators:

      1. Jessica

      Sub-Forums:

      1. Contact Forum Committee Leaders

      Forum Actions:

      Forum Statistics:

      • Threads: 108
      • Posts: 1,636

      Last Post:

    2. New Member Introductions

      (1 Viewing)

      This forum is for introducing yourself to other members. Tell us who you are and who the special child is in your life.

      Forum Actions:

      Forum Statistics:

      • Threads: 594
      • Posts: 15,004

      Last Post:

    3. Medical Issues

      (8 Viewing)

      Surgeries, doctor’s appointments, and other medically related challenges that our MPS/ML children encounter.

      Moderators:

      1. PattyT
      2. robert t

      Forum Actions:

      Forum Statistics:

      • Threads: 3,614
      • Posts: 61,608

      Last Post:

    4. Day to Day Issues with MPS/ML

      This area is for the daily issues we encounter with raising a special child. The concerns in this forum are not necessarily “medically related” but discuss issues of school, yearly IEP’s, skin problems, or other challenges we face on a daily basis.

      Moderators:

      1. Jake's Mom
      2. louise lewis

      Forum Actions:

      Forum Statistics:

      • Threads: 1,764
      • Posts: 23,241

      Last Post:

    5. Hints and Tips

      Special boarding at flight time? Passes to various parks? Restaurants that offer deals? Lots of tidbits to share so come on in!

      Moderators:

      1. lauraeden
      2. jmeb17

      Forum Actions:

      Forum Statistics:

      • Threads: 28
      • Posts: 230

      Last Post:

    6. Forms of Treatment

      (3 Viewing)

      For children and family members who are considering, or who are currently undergoing a form of treatment for MPS/ML such as Bone Marrow Transplants or Enzyme Replacement Therapies.

      Moderators:

      1. Elizabeth Schuepbach
      2. ethansdad

      Forum Actions:

      Forum Statistics:

      • Threads: 763
      • Posts: 9,500

      Last Post:

    7. Coconut Lounge

      (6 Viewing)

      The title says it all! This is our hangout and not all subject material pertains to MPS/ML. It’s our get-away from the hubbub so let’s have fun!

      Moderators:

      1. Elizabeth Schuepbach
      2. Jessica
      3. ClbsMm2000

      Forum Actions:

      Forum Statistics:

      • Threads: 4,401
      • Posts: 75,724

      Last Post:

    8. Emotions

      (9 Viewing)

      This forum is dedicated to the emotions we all feel as MPS/ML parents. Share your funny stories, jokes, birthday announcements, wedding anniversaries, and even on sadder occasions, stories of grief.

      Moderators:

      1. louise lewis
      2. Jake's Mom

      Forum Actions:

      Forum Statistics:

      • Threads: 2,840
      • Posts: 48,856

      Last Post:

    9. The National MPS Society (U.S.A)

      Important announcements and updates from the National MPS Society (USA)

      Sub-Forums:

      1. Contact the National MPS Society (USA)

      Forum Actions:

      Forum Statistics:

      • Threads: 3
      • Posts: 12

      Last Post:

    10. The Latest News About MPS/ML

      Please post all news updates relating to Research, Fund Raisers and Upcoming Conferences here.

      Moderators:

      1. Elizabeth Schuepbach
      2. Dani's Mom

      Forum Actions:

      Forum Statistics:

      • Threads: 729
      • Posts: 9,795

      Last Post:

    11. Financial and Care Services

      A forum for finding Financial and Care Services in the state which you reside. ~Parents helping Parents

      Moderators:

      1. Robin
      2. Val

      Sub-Forums:

      1. A thru K
      2. Alabama
      3. Alaska
      4. Arizona
      5. Arkansas
      6. California
      7. Colorado
      8. Connecticut
      9. Delaware
      10. Florida
      11. Georgia
      12. Hawaii
      13. Idaho
      14. Illinois
      15. Indiana
      16. Iowa
      17. Kansas
      18. Kentucky
      19. L thru N
      20. Louisiana
      21. Maine
      22. Maryland
      23. Massachusetts
      24. Michigan
      25. Minnesota
      26. Mississippi
      27. Missouri
      28. Montana
      29. Nebraska
      30. Nevada
      31. New Hampshire
      32. New Jersey
      33. New Mexico
      34. New York
      35. North Carolina
      36. North Dakota
      37. O thru W
      38. Ohio
      39. Oklahoma
      40. Oregon
      41. Pennsylvania
      42. Rhode Island
      43. South Carolina
      44. South Dakota
      45. Tennessee
      46. Texas
      47. Utah
      48. Vermont
      49. Virginia
      50. Washington
      51. West Virginia
      52. Wisconsin
      53. Wyoming

      Forum Actions:

      Forum Statistics:

      • Threads: 119
      • Posts: 284

      Last Post:

    12. Technical Issues with the Forum

      If you are having trouble using this forum please post here. Also you can use this forum to make your first post and test your wings! Try out your new signature line or photo or whatever feature you may be trying to add.

      Moderators:

      1. Jessica
      2. Robin

      Forum Actions:

      Forum Statistics:

      • Threads: 259
      • Posts: 2,259

      Last Post:

  3. Private Forum - General Discussion Last Post

    1. The Private Side of the Island - Registered Members Only

      Registered/Active members: To be added to this area please contact a Staff Member so we can assist you.

      Moderators:

      1. Alericosmom
      2. 5th Wiggle

      Forum Actions:

      Forum Statistics:

      • Threads: 483
      • Posts: 7,474

      Last Post:

      Private

  4. Private Forum - The Later Years of MPS & ML Last Post

    1. The Later Years - Registered Members Only

      For those who wish to support parents who have children in the Final stages of MPS or ML. Registered/Active members: To be added to this area please contact a Staff Member so we can assist you.

      Moderators:

      1. Alericosmom
      2. louise lewis

      Forum Actions:

      Forum Statistics:

      • Threads: 329
      • Posts: 5,995

      Last Post:

      Private

  5. Private Forum - The Loss of a Child Last Post

    1. The Loss of a Child - Registered Members Only

      For those who have suffered the loss of a child. Registered/Active members: To be added to this area please contact a Staff Member so we can assist you.

      Moderators:

      1. Ria
      2. Val

      Forum Actions:

      Forum Statistics:

      • Threads: 73
      • Posts: 577

      Last Post:

      Private

  6. Private Area - MPS & ML Specific Diagnosis Last Post

    Parents only of children affected with MPS or ML. Registered/Active members: To be added to this area please contact a Staff Member so we can assist you.

    1. MPS I (Hurler, HS & S) - Parents Only

      Private forum for parents of MPS I children. (Hurler, HS & S)

      Moderators:

      1. ClbsMm2000
      2. Sandi
      3. Dani's Mom

      Forum Actions:

      Forum Statistics:

      • Threads: 127
      • Posts: 1,424

      Last Post:

      Private

    2. MPS II (Hunter) - Parents Only

      Private forum for parents of MPS II children. (Hunter)

      Moderators:

      1. Laura Brodie
      2. jmeb17

      Forum Actions:

      Forum Statistics:

      • Threads: 60
      • Posts: 489

      Last Post:

      Private

    3. MPS III (Sanfilippo) - Parents Only

      Private forum for parents of MPS III children. (Sanfilippo A,B, C or D)

      Moderators:

      1. 5th Wiggle
      2. Aisling's Mom
      3. lauraeden

      Forum Actions:

      Forum Statistics:

      • Threads: 32
      • Posts: 341

      Last Post:

      Private

    4. MPS IV (Morquio A or B) - Parents Only

      Private forum for parents MPS IV children. (Morquio A or B)

      Forum Actions:

      Forum Statistics:

      • Threads: 0
      • Posts: 0

      Last Post:

      Never

    5. MPS VI (Maroteaux-Lamy) - Parents Only

      Private forum for parents of MPS VI children. (Maroteaux-Lamy)

      Forum Actions:

      Forum Statistics:

      • Threads: 0
      • Posts: 0

      Last Post:

      Never

    6. MPS VII (Sly) - Parents Only

      Private forum for parents of MPS VII children. (Sly)

      Forum Actions:

      Forum Statistics:

      • Threads: 0
      • Posts: 0

      Last Post:

      Never

    7. ML II/III (I-Cell, Pseudo-Hurler Polydystrophy) - Parents Only

      Private forum for parents of ML II/III children. (I-Cell, Pseudo-Hurler Polydystrophy)

      Forum Actions:

      Forum Statistics:

      • Threads: 0
      • Posts: 0

      Last Post:

      Never

    8. Adults affected with MPS or ML

      Private forum for adults affected with MPS or ML disorders.

      Moderators:

      1. Vibe

      Forum Actions:

      Forum Statistics:

      • Threads: 5
      • Posts: 18

      Last Post:

      Private
Mark Forums Read | View Site Leaders

What's Going On?

Currently Active UsersCurrently Active Users

3 members and 64 guests

Most users ever online was 151, February 20th, 2012 at 06:45 AM.

  1. PattyT
  2. Sandi
  3. Vibe

Today's BirthdaysToday's Birthdays

  1. ethan's mom and dad (10)

MPS and ML Forums StatisticsMPS and ML Forums Statistics

Threads
17,808
Posts
286,493
Members
892
Active Members
94

Welcome to our newest member, Larry

Blogs
12
Entries
25
Last 24 Hours
0

Latest Blog Entry, Isaiah and Christian by Gerrie

Icon LegendIcon Legend

Contains unread forum posts
Contains unread forum posts
Contains no unread forum posts
Contains no unread forum posts
Forum is a category
Forum is a category
Forum is a Link
Forum is a Link