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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Blog
CDC Estimates 1 in 68 school-aged children have autism
The Center for Disease Control (CDC) issued a Press Release today regarding its findings from data collected by the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) network. The report shows no change in the autism spectrum disorder prevalence from the previous report in 2014.
According to Dr. Stuart K. Shapira, chief medical officer for CDC’s National Center on Birth Defects and Developmental Disabilities,
The most powerful tool we have right now to make a difference in the lives of children with ASD is early identification.
The CDC has more information at www.cdc.gov/Autism.
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.
Happy Easter!
I love Texas bluebonnets at Easter time. Below I am sharing my favorite Easter picture of Jonathan so far.
Duchenne Muscular Dystrophy
Please think about visiting this website today and get great information about Duchenne Muscular Dystrophy and how you can help.
http://cureduchenne.com/blog/giving-our-sons-with-duchenne-the-best-care-possible/
The video starting with Emily and Will about clinical trials and research had a huge impact on me and I hope you take the time to watch it at http://www.cureduchenne.org/about-cureduchenne.html
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
New Instagram
Hello all,
I just created an Instagram account for Autism_Atty. If you have an Instagram account for you and your loved one with a disability, look me up. I would love to see your lives through pics!
Leona
Katy Autism Support Presentation 4/19
I am excited about my next official speaking engagement! I have been invited to speak at the April meeting for Katy Autism Support.
Support Meeting April 19th, 2016; Special Needs Attorney presentation.
Leona E. Filis, attorney and mother of a child on the autism spectrum will discuss how families with children with special needs can gain more knowledge and information about Special Education Law, Family Law,Probate/Trusts, Guardianship and Medicaid Waivers. Her law practice focus is on the legal services of families with children with special needs. Full description of Ms. Filis’ presentation will be updated as the meeting date approaches.
Date: Tuesday, April 19, 2016
Time: 7:00—9:00 PM
Location: St. Peter’s United Methodist Church, Asbury Hall, 1st floor, 20775 Kingsland Blvd., Katy, TX
If you have any questions, please send an email to Cynthia Reece at kgreeceman@aol.com.
Free childcare is available, RSVP the special needs ministry coordinator at sarahmorrison@sbcglobal.net for childcare no later than Sunday, April 15, 2016.
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. 