Parent/ Legal Guardian Registration Question Title * 1. Primary Parent/ Legal Guardian Contact Information First and Last Name * Company Address * Address 2 City/Town * State/Province * -- select state -- AL AlabamaAK AlaskaAS American SamoaAZ ArizonaAR ArkansasCA CaliforniaCO ColoradoCT ConnecticutDE DelawareDC District of ColumbiaFM Federated States of MicronesiaFL FloridaGA GeorgiaGU GuamHI HawaiiID IdahoIL IllinoisIN IndianaIA IowaKS KansasKY KentuckyLA LouisianaME MaineMH Marshall IslandsMD MarylandMA MassachusettsMI MichiganMN MinnesotaMS MississippiMO MissouriMT MontanaNE NebraskaNV NevadaNH New HampshireNJ New JerseyNM New MexicoNY New YorkNC North CarolinaND North DakotaMP Northern Mariana IslandsOH OhioOK OklahomaOR OregonPW PalauPA PennsylvaniaPR Puerto RicoRI Rhode IslandSC South CarolinaSD South DakotaTN TennesseeTX TexasUT UtahVT VermontVI Virgin IslandsVA VirginiaWA WashingtonWV West VirginiaWI WisconsinWY Wyoming ZIP/Postal Code * Email Address * Phone Number * Question Title * 2. What is your preferred language? Question Title * 3. Would you like to join DSACT's Comité Latino social group (bilingual/Spanish-speaking social group)? Yes No Question Title * 4. How do you prefer for DSACT to first reach out to your family? Phone Email Question Title * 5. How did you find out about DSACT? Hospital/clinic at screening/diagnosis (doctor, nurse, social worker, etc) Medical provider after diagnosis (pediatrician, nurse, etc) Educational professional Current DSACT member DSACT board member DSACT event Other community event Friend Media (TV, print, social media, radio) Online search Other (please specify) Question Title * 6. Place of Employment (this question will help DSACT obtain matching donations) Question Title * 7. Job Title Question Title * 8. Would you like to join our mailing list to receive our newsletter and event updates? Yes No Question Title * 9. Additional Parent/ Legal Guardian First, Last Name Company Address Address 2 City/Town State/Province -- select state -- AL AlabamaAK AlaskaAS American SamoaAZ ArizonaAR ArkansasCA CaliforniaCO ColoradoCT ConnecticutDE DelawareDC District of ColumbiaFM Federated States of MicronesiaFL FloridaGA GeorgiaGU GuamHI HawaiiID IdahoIL IllinoisIN IndianaIA IowaKS KansasKY KentuckyLA LouisianaME MaineMH Marshall IslandsMD MarylandMA MassachusettsMI MichiganMN MinnesotaMS MississippiMO MissouriMT MontanaNE NebraskaNV NevadaNH New HampshireNJ New JerseyNM New MexicoNY New YorkNC North CarolinaND North DakotaMP Northern Mariana IslandsOH OhioOK OklahomaOR OregonPW PalauPA PennsylvaniaPR Puerto RicoRI Rhode IslandSC South CarolinaSD South DakotaTN TennesseeTX TexasUT UtahVT VermontVI Virgin IslandsVA VirginiaWA WashingtonWV West VirginiaWI WisconsinWY Wyoming ZIP/Postal Code Email Address Phone Number Question Title * 10. Place of Employment (this question will help DSACT obtain matching donations) Question Title * 11. Job Title Question Title * 12. Name of Individual with Down syndrome First, Last Name Question Title * 13. Date of Birth of Individual with Down syndrome DOB Date Question Title * 14. This individual's ethnicity Hispanic Not Hispanic Prefer not to say Question Title * 15. This individual's race Asian Black Hawaiian or Pacific Islander Native American/American Indian/Alaska Native White Prefer not to say Question Title * 16. This individual's gender Female Male Non-binary Prefer not to say Question Title * 17. Name of Sibling 1 (If your family member with Down syndrome has adult siblings that live outside your home, please encourage those siblings to become DSACT members here. There is NO charge for membership.) First, Last Name Question Title * 18. Date of Birth of Sibling 1 DOB Date Question Title * 19. Name of Sibling 2 First, Last Name Question Title * 20. Date of Birth of Sibling 2 DOB Date Question Title * 21. First and Last Name and Date of Birth of Additional Sibling(s) TO HELP US BETTER UNDERSTAND OUR MEMBERSHIP AND ASSIST OTHER PARENTS, PLEASE FILL OUT THE FOLLOWING VOLUNTARY INFORMATION. Question Title * 22. Hospital where child with Down syndrome was born. Question Title * 23. City where your child with Down syndrome was born. Question Title * 24. State where your child with Down syndrome was born. Question Title * 25. Timing of diagnosis? Pre-natal Postnatal Unknown Question Title * 26. Please let us know about additional medical conditions for the individual with Down syndrome. Alzheimer's disease Anxiety disorder Attention deficit hyperactivity disorder (ADHD) Autism spectrum disorder Celiac disease Depressive disorder Gastrointestinal disorder Hearing loss (corrected or uncorrected) Heart/cardiac complications Hypothyroidism Leukemia Sleep apnea Vision disorder (corrected or uncorrected) No medical conditions Question Title * 27. At the time your doctor first told you that your baby has, or likely has, Down syndrome, did your doctor give you this information about Down syndrome from the state website? Information about Down Syndrome for New and Expecting Parents Yes No I can't remember/ don't know Question Title * 28. At that time, did your doctor give you any other information about Down syndrome? Please select all that apply. Understanding a Down Syndrome Diagnosis A Promising Future Together No I can't remember/ don't know Other Information (please specify) Question Title * 29. If someone other than a doctor first told you that your baby has, or likely has, Down syndrome, who was that person: Nurse Genetic counselor Social Worker Other (please specify) Question Title * 30. If your child is under 2 years old, are you willing to confidentially share your diagnosis experience with a DSACT staff or board member? (A DSACT staff or board member may contact you if you if you would like to share your story with us.) Yes No Question Title * 31. If your child with Down syndrome is an adult over 18, does your child live independently with parent(s) with sibling(s) with guardian other than parent or sibling with friend(s) in a group home in a state-funded facility (e.g., state-supported living center, state hospital) other Done
