A note from Debra

Action Alert: Contact Your Texas State Senator Today

Posted on January 30, 2017 4:48 pm

 

Calling all Texans.  Take action today and let your voices be heard.  Call your Texas State Senator and ask them to support Medicaid funding for the treatment of Duchenne.

Overview

  • The Texas Legislative Budget Board (LBB) is made up of a panel of state legislators who must approve all new Medicaid expenditures above $500,000 (aggregate) in state funding.
  • This board must approve all new treatments and authorize funding before treatment will be reimbursed.
  • The Texas Senate Medicaid budget hearings are on January 30th-31st.
  • Because the Texas legislature only meets every 2 years it is important to have your voice heard now while they are still in session this year. So that would be a good time for families to reach out to the senators and tell their story

Call to Action:

  • Contact your state senators (Link to find their respective legislators http://www.fyi.legis.state.tx.us/Home.aspx)
  • Tell your story about living with Duchenne
  • Ask them to support and authorize funding for the first approved treatment for Duchenne
  • Encourage other families to do the same

 

 

Physical Therapist Darcy Peach Provides Peace of Mind to Duchenne Families

Posted on January 26, 20173:51 pm

  Darcy Peach discovered her calling to become a physical therapist while undergoing treatment for a volleyball injury in high school. During her treatment sessions, Darcy’s physical therapist took a great deal of care and time in treating her.  She witnessed first-hand the therapeutic and relationship building benefits that occur during the process of physical Read more »

Deflazacort Transition Program Reminder

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