Family Resources 

 

closed 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 here.

SATB2 family meet ups

Being able to meet another SATB2 family in person is very special. There is an instant connection when meeting another parent or sibling on the same journey, as if you have known then for years. Further, it is powerful and amazing to see the bond individuals with SATB2 develop with each other. It is a memorable experience, which allows SATB2 families to develop long-lasting bonds and additional support networks.

We want to help foster these personal connections during the years when we do not have a family conference (the next SATB2 International Family Conference will be in 2020).

Would you like to help coordinate a meet up of SATB2 families in your area? Just read below and complete the form.

The Foundation has set aside funds in the 2019 budget to help offset the expenses incurred to host a family meet up. If you would like to organize a family meet up, please complete the short form which will be reviewed by the SATB2 Gene Foundation Board of Directors. Requests for funds should be submitted no later than 4 weeks prior to the planned gathering. The suggested maximum allotment per outing is $300, but all proposals will be considered.

Need ideas? Family outings can range from casual meet ups at the park with a picnic, at someone’s house for a social gathering, a day outing to the local Zoo, children’s museum, bowling, or any other idea that might work well in your community.

Don’t need funds but want help to advertise? The SATB2 Gene Foundation can help with that too!

Click here to submit the form for review - http://bit.ly/SASMeetup

For more information, please contact Nikki Johnson at info@satb2gene.org

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! 

Did You Know About the uhccf.org grant?

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! 

What About Apraxia of Speech?

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.

Lifetime National Park Passes… For FREE!

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. 

 Do you need help with Individualized Education Plans (IEPs)? 

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.  

Please continue to check back as we update this section with more resources.