Tomorrow morning at 8:00 on KPFT 90.1 Open Journal. Lindy Fillis (mom to Ditri age 5) and Erin Bullers (mom to Nicholas age 12) will be doing an interview from 8:25 to 8:55 explaining Duchenne MD, upcoming Cure Duchenne Cares event taking place on Friday and Saturday, and resources for families. They will also share with the audience on how they can help the Duchenne community with the critical adcom coming up on April 25th with the FDA. Although etepliresen only helps 13% of Duchenne boys, it will pave the way for future drug approval.
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> You can urge your Senators to Sign a letter to the FDA. The link to do that is:
> https://secure2.convio.net/
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Category: Local Resources
Financial Planning
Knowing that you must prepare for your child’s future is nothing new. Knowing how to properly plan for your child’s future when he or she is diagnosed with a disability is confusing and frustrating. The wait on Interest Lists for Medicaid Waiver Programs can be up to ten years. Once you finally start to receive benefits, you have to have a plan in place to maintain the benefits. That is where Special Needs Trusts and ABLE Act accounts (529A) can be fantastic resources for your estate planning.
Another planning consideration for parents of children with special needs is insurance. Life Insurance to truly cover expenses for of lives of your loved ones. Life Insurance should not just cover the “breadwinner” parent. In the event the care-giver parent dies, the family must hire others to continue to provide appropriate care for the child or children with special needs.
Unfortunately the insurance discussion does not end with life insurance. If the “breadwinner” parent becomes disabled, he or she may become underemployed or unemployed and disability insurance can help.
As a member of Heights Go Givers (HGG), I have had many opportunities to meet with professionals from the Heights and surrounding area on a weekly basis. Over the past few months I have had the pleasure of learning about the character and professionalism of Michelle Gessner of gessnerwealthstrategies.com. Substantively, Michelle has proven herself to be very knowledgeable, both in one-on-one discussions and as a speaker at conferences and meetings I have attended. If you are looking for a brilliant, compassionate, and disciplined advisor, contact Michelle.
Cure Duchenne Cares Workshop April 9th
April 9th at 1:15 pm, Leona E. Filis will be speaking about legal issues, including Special Needs Trusts, Wills, and Medicaid Waiver Programs – specifically C.L.A.S.S.
For more DMD Workshop information, go to cureduchennecares.org
Conference March 5th
The 11th Annual Conference Resource Fair Saturday March 5th
Come visit the BMK booth to get information about estate planning, including Special Needs Trusts and wills tailored to address the needs of your family. For more info about BMK go to www.bmkpllc.com
The HCC campus in Spring Branch at 101 Sam Houston Parkway will be the place to be on Saturday March 5th. Free entry for the those who register early
Register On-line January 11th – February 26th at:
http://11thannualconferencespecial2016.sched.org/
For more information, call Family to Family Network at 713-466-6304
Success at the Resource Fair at Memorial Drive UMC
8:30 am is really early to be setting up at a resource fair on a Saturday but we did it! I felt like I was losing my voice around noon because of all the talking I was doing but it was worth it. GinLeo shared information with parents for hours on the importance of getting their kids with special needs on the Interest Lists for Medicaid Waiver Programs, and all of the benefits and therapies that can benefit their children. I saw family members, old friends, and made new friends.
Added bonus – I got a free copy of the 2016 Mikey’s Guide – A Resource Guide for Families with Children, Teens or Adults with Disabilities.
Now I am on the hunt for the next conference. 
Breaking Barriers Conference
Well the Breaking Barriers Conference was a success! Many parents attended this conference to learn about resources for children with disabilities and to share common experiences. For my early morning presentation, we discussed the importance of getting children with disabilities on the Interest Lists for Medicaid Waiver Programs, regardless of the parents’ income. Also, the vendor table for GinLeo had a nice flow of traffic from therapists and parents interested in receiving therapy for their children who receive benefits from the C.L.A.S.S. program. For more information on GinLeo go to http://www.ginleoinc.com.
Kids returning to school? Is there a Special Ed PTA?
I have read about PTA’s that are for Special Education. We are in Spring Branch and I am wondering if SBISD has a SEPTA and if it is worth joining? What are the benefits for our disabled kids?
https://www.pta.org/content.cfm?ItemNumber=2100
http://cms.springbranchisd.com/pta/Home/tabid/25483/Default.aspx
Sensory Friendly – Movies at Santikos – 1st Saturday of every month
Gina Mouser Presentation for Parents with nonverbal autistic children
My family has benefited for years from Gina Mouser and her natural ability to connect with autistic children and her advise to adjust environments and parents’ actions. She is offering a free presentation called “Teaching Functional Communication & Reading skills” (Specifically those who are “non-verbal”) on Wednesday, July 15, 2015 at 6:00 pm. Please RSVP by July 10, 2015 to ginaam@sbcglobal.net.
Around Town – Children’s Museum
One of my favorite venues in Houston to go to with my son is The Children’s Museum. Upcoming sensory-friendly days are March 23rd and April 6th.