SATB2 GENE FOUNDATION FAMILY ASSISTANCE PROGRAM (FAP)

Let’s face it. Providing for your SAS loved one can get expensive. If you need assistance, the SATB2 Gene Foundation may be able to help.

We are proud to announce the launch of the SATB2 Gene Foundation Family Assistance Program (FAP). In 2021 we were able to support 19 SAS families globally through our inaugural FAP.  In 2022, during the month of October only, we will accept applications for our Family Assistance Program as part of our mission and ongoing commitment to providing our SAS families with the support they need. Families who apply and are approved for assistance can receive up to $1,200 to help them pay for items such as:

  • Durable medical goods (e.g., wheelchairs, orthotics, medical strollers, specialty beds, etc.)
  • Devices or equipment intended to support or enhance communication and education (e.g., tablets/iPADs, communication apps, and specialty equipment to improve educational success and enhance communication.)
  • Adaptive play items (e.g., adaptive bikes and swings; full-support swimming seats; bouncy chairs; weighted vests and blankets; sensory sacks)
  • Base therapies (speech therapy, physical therapy, occupational therapy, applied behavior analysis therapy)
  • Alternative therapies (e.g., therapeutic horseback riding; aquatic, music, or massage therapy)
  • Travel to a clinic/specialist (excluding the ACH Multidisciplinary Clinic)

Please note that a confirmation of a SATB2-Associated Syndrome Diagnosis must be on file with the SATB2 Gene Foundation or on record with Arkansas Children’s Hospital as part of the Clinical Registry in order for your application to be considered.  Failure to submit proof of diagnosis by October 31st will not be considered for funding.

To learn more about the SATB2 Gene Foundation FAP, or to submit an application, click below.

FAP Application

FAMILY SUPPORT FACEBOOK GROUP

The SATB2-associated syndrome Family Support Group (closed Facebook group) is a highly active group of family members of individuals with SATB2-associated syndrome.  Our SATB2-associated syndrome Family Support Group has daily communication on topics such as medical, developmental, and behavioral issues.  Additionally, we share resources with each other, and importantly, we also share triumphs, which we call SAS Smiles.  Members include families from all over the United States and Europe, as well as Australia and Canada.  Parents of individuals with SATB2-associated syndrome are encouraged to request access to join the group by clicking the button below. If you need additional assistance with your membership request for this group, please email Wiebke Sunderhauf.

Request Access

SATB2 SUPPORT RESOURCE CORNER

An ongoing list of resources will be added here for families both within the United States and Internationally.  Visit this page often for updates.  Have a resource to share?  Email us to have it added! Please continue to check back as we update this section with more resources.

This is a grant for US citizens with disabilities up to age 18 who have private insurance that doesn’t cover the amount of therapy needed, or doesn’t cover therapy at all. Children on Medicaid are not eligible, but if you do qualify, you can receive up to a $10,000 lifetime max of therapy/ medical equipment! Go to uhccf.org to find out more about it!

There has been a lot of talk about Childhood Apraxia of Speech; many of our children were diagnosed with this disorder before we found the genetic diagnosis! The best website to visit for this is Apraxia Kids. There are videos and information you can easily download to learn more.

The organization, CASANA, is hosting a conference that is internationally attended each year. This year, the conference is in Charlotte, North Carolina, USA, on July 12-14, 2018. There are scholarships available to first-time attendees, ranging in amount granted.

If you or your Speech Language Pathologist (SLP) wants more information about Apraxia, but can’t attend the conference, there are webinars, live and on-demand, available. If you are looking for a good Apraxia SLP, there is a list of CASANA boot camp graduates at https://www.apraxia-kids.org/speech-pathologist-directory/. Currently, only SLPs in the USA and Canada are listed, but if you submit an email, you can sometimes get information about SLP graduates in other countries.

Normally, America the Beautiful passes are about $80/ year. BUT, you take a copy of your child’s birth certificate and genetic diagnosis to any ranger’s station in any national park in the United States, you can get a pass for your child to get into any national park in the United States for free, for life!! If you prefer, you can mail in the information with a $10 processing fee, and get it back. And for the majority of parks, that allows whoever is in the car with them to get in for free as well! Also part of the pass is discounts on camping grounds and merchandise purchases when shown in the parks. Click here to learn more.

Wrightslaw is a great starting point to learn more about Special Education Law and how to advocate for your child’s best interest during their IEP meeting.

FAMILY RESOURCE VIDEOS

See below for additional family resources videos related to SATB2-Associated Syndrome.