Form – Membership – Families
Registration Form for New Members and Renewals
Registration is Free. SOFT will not share your personal information with outside organizations and will obtain your permission before sharing it with another SOFT family. SOFT will make your registration information available to the Chapter Chair for your State, unless you tell us not to (see below). Use mm/dd/yyyy as the date format. Table fields will expand as you type in them. To add more rows in an entry, click the little "+" sign on the right side. Fields with an asterisk next to them are "required" fields. Medical Professionals: Please use the "Professionals" form.
FAMILY INFORMATION SECTION (SOFT does not share this information with any other organization
Please enter your FIRST and LAST name(s)
Language - if you are fluent in a language OTHER than English, please tell us here:
Your Address (fields will expand as you type in them):
Street Address 1
Street Address 2
Country, if not USA
Please enter a phone number where we can reach you if necessary (we don't share any information with other organizations):
Phone Number w/Area Code
All memberships are free. Please select the ONE type of membership you are registering for (don't check multiple boxes):
1 year NEW MEMBER - PARENT(S) membership
1 year RENEWAL - PARENT(S) membership
1 year NEW - SUPPORTER membership
1 year RENEWAL - SUPPORTER membership
Permissions: SOFT will not share your information with any outside organization but would like your permission to share it with your State or Country Chapter Chair and within SOFT management.
Yes, I give permission to share my information with my State's Chapter Chair person and SOFT management.
No, SOFT may not share my information with my State's Chapter Chair or SOFT management
INFORMATION ABOUT YOUR CHILD:
Is your child NOT YET BORN at this time? If so, put the expected birth date in this field.
Enter your Child's information here (be sure the LAST NAME is included):
Child's FIRST and LAST Names:
Gender (male or female)
Birth Date (Month/Day/Year)
Death Date, if applicable (Month/Day/Year)
Cause of Death
Click the Arrowhead to Select Your Child's Diagnosis from the Drop-down Menu
Full Trisomy 13
Full Trisomy 18
Mosaic Trisomy 13
Mosaic Trisomy 18
Other (please describe below)
Describe the "Other" Affected Chromosome or Diagnosis:
Enter Information about your child's weight, length and feeding. Enter either grams and CM or pounds/ounces and inches. We will do any necessary conversions:
Birth Weight (in lb/oz or Grams) (1kg = 2.205 lb)
Birth Length (inches or CM) (1cm= 0.394 inch)
Current Weight (lb/oz or Grams)
Current Length (inches or CM)
Date of Current Weight & Length
VACCINATION AND SURGERY REPORTING SECTION (note that certain questions apply ONLY to CARDIAC surgeries):
Providing vaccination information is optional but helps SOFT's data collection effort. Please indicate with "Yes" or "No" if your child:
Is/Was up-to-date with State vaccine recommendations:
Received annual flu vaccine:
Received the Synagis series for RSV prevention:
Had a vaccine reaction? Explain here:
If your child had a vaccine reaction, please say which vaccine caused it, if you can identify which it was.
If your child had a vaccine reaction, please describe the reaction.
SOFT receives frequent inquiries about surgeries/procedures. Providing this information is optional but very helpful to families overall. Enter a FIRST surgery/procedure here:. Click the little "+" sign to open a new row for an additional surgery.
Date of Surgery/Procedure (MM/DD/YY)
Name of Surgery/Procedure
Name, City & State of Hospital
Name of Physician(s)
Was it Successful (Yes, No, Partially)?
Note: If you need to report more than 4 surgeries, please use the "Report Unreported Surgeries" form for the additional ones.
If you reported a CARDIAC surgery on this form, please complete the following:
Was it difficult to find a willing cardiac surgeon (YES/NO)?
Number of days in PICU after Cardiac Surgery:
Was your child discharged to home (YES/NO)?
If NOT still living, child's survival time after surgery:
Press the "Send Form to SOFT" BUTTON below to send this form. In response, you will receive an acknowledgement email.
This field is for validation purposes and should be left unchanged.