TIPS FOR CHAPTER CHAIRS (STATE CONTACTS)
Expectant Parents: New registrations from expectant parents are automatically sent to Terra Garst of Omaha, NE. Terra is an RN, mother of Emerson who has a related disorder and volunteers as the SOFT contact for expectant parents. She makes two attempts to contact the expectant parent; sometimes she gets no response.
But it is also important for state contacts to connect with new expectant families as local contact is something families desire. As a chapter chair/state contact you can go into the website and bring up the list of your state’s families registered with SOFT. Some of these families know each other from Face book but not all SOFT families are on Facebook.
The following links are on the SOFT Expectant Parent website page:
- The NIPT and PPV info on the link above are important to those who have questions about diagnosis.
- A very helpful free eBook- Preparing for the Arrival of your Baby https://www.internationaltrisomyalliance.com/free-booklets.html
- A well written birth plan – Preparing for Hannah Faith https://trisomy.wpengine.com/wp-content/uploads/2015/01/Preparing-for-Hannah-Faith.pdf
For those parenting a child: SOFT website at https://trisomy.wpengine.com/?page_id=4314
- SOFT suggests they refer to the Publications page for many helpful documents, including the latest edition of the “Carebook“.
- Encourage joining the SOFT private Facebook group (for all trisomy diagnoses) https://www.facebook.com/groups/TrisomySOFT/
- A public support group for T13 is https://www.facebook.com/groups/Trisomy13/ The Administrator of this group, Therese Ann, encourages these families to join SOFT. Many belong to both Facebook groups.
Medicaid WAIVER information is something that families are often not told about by their care providers. Point parents to this link under menu choice Resources on the SOFT website- https://medicaidwaiver.org/https://medicaidwaiver.org/ Medicaid changes might be coming but for now this is a resource with phone numbers parents can call for information.
Since the advent of NIPT the finding of Trisomy-friendly OB/MFM doctors seems to be almost as hard as finding willing cardiac surgeons. The following link www.aaplog.org lists pro-life OBGYNs. SOFT does not endorse it but it might prove helpful. Apparently not all physician names are made public. There might be more if one asks about a specific locality.
For those remembering a child: SOFT suggests the following.
- The SOFT private Facebook group https://www.facebook.com/groups/TrisomySOFT/ as a contact with other SOFT families.
- Trisomy Angel Parents https://www.facebook.com/groups/TrisomyAngelParents/ for those who have lost a child.
- SOFT website has some helpful reading at https://trisomy.wpengine.com/?page_id=24556
General Information: A link to a SOFT tri-fold brochure that can be copied on to a regular sheet of paper can be found on the homepage menu choice About SOFT>Tri-fold Brochure. These brochures can be dropped off at medical offices as information flyers for families or used for fund-raising purposes. Sometimes they are passed out at medical events in which a family might be participating.
Trisomy Awareness postcards should still be available but there is a minimum charge. Click Events in the menu bar – https://trisomy.wpengine.com/?page_id=9808
The most import part is to listen to families and let them know you care…