January 23, 2020 / Community

End Duchenne Tour Connect Group Session: Houston, TX

Parent Project Muscular Dystrophy by: Parent Project Muscular Dystrophy

Some of the Chevron Houston Marathon Race to End Duchenne team at our End Duchenne Tour Connect Group Session in Houston, TX!

PPMD’s End Duchenne Tour made a stop in Houston, TX on Saturday, January 18. We were joined by over 40 people, including PPMD’s Connect Coordinators for South Texas, several PPMD families, and some of the amazing members of our Chevron Houston Marathon Race to End Duchenne team!

This event kicked off the 5th year of PPMD’s End Duchenne Tour as we know it and was the first of our Connect Group Series. This year, PPMD is expanding the End Duchenne Tour in 2020 to include Connect Group Sessions, which will provide condensed agendas led by Connect Coordinators and allow families to discover their local Duchenne community.

We are incredibly thankful to our volunteer speakers that helped bring pertinent information to our local families, some of whom were new to the PPMD community.

Presentation Highlights

  • Leona Filis, J.D. The Filis Law Firm
    • Leona shared her expertise in legal planning for special needs children, and covered topics including the Texas Medicaid Waiver Program, Special Needs Trusts, and 529A Bank Accounts. Leona will be presenting at PPMD’s Annual Conference in Scottsdale this June, so look for her there!
    • Download PDF
  • Sara McMahan, PT, PCS, The T.E.A.M. Approach Pediatric Therapy Services, Inc.
    • Sara is a well-known local physical therapist in the Houston Duchenne community and discussed promoting a life of independence through physical therapy and medical aids, to make life with Duchenne easier to navigate.
  • Christine Salinas, MOT-OTR, Strowmatt Rehabilitation Services
    • Christine covered Strowmatt’s key areas of service, which include Driver Evaluations, Behind the Wheel Training and Equipment Prescription, which is a personalized plan for vehicle modifications.
  • Rachel Poysky & Erin Bullers, parents, PPMD Connect Coordinators
    • Rachel and Erin discussed the Connect program and how local families can get involved in social and informational gatherings throughout the year. To find out more about the Connect group, join the Facebook group or email ppmdconnectsouthtexas@gmail.com.
    • Rachel also talked about Coach to Cure MD, PPMD’s partnership with the AFCA to promote awareness and raise funds. This year’s Coach to Cure is September 26th and you can get involved by visiting coachtocuremd.org.
  • Nicole Herring, PPMD

Join the Fight

Our Race to End Duchenne team for this year’s Chevron Houston Marathon raised more than $15,000 this year and had a great time doing so! If you’d like to run with us next year for the full or half marathon on Sunday, January 17, 2021 click here to register or email nicole@parentprojectmd.org if you have any questions!

Many other opportunities also exist with our Race to End Duchenne and other signature fundraising programs. Visit the Get Involved section of our website to find out how you can join the fight.

Thank You!

 

Thank you to our Sponsors

Although individual presentations for each sponsor do not take place at Connect Sessions, we would like to recognize and thank our partners that help make this effort possible and encourage you to reach out to us or them directly if you have questions regarding specific trial information.

  • Catabasis
  • Italfarmaco
  • NS Pharma
  • PTC
  • Pfizer
  • Roche/Genentech
  • Santhera
  • Sarepta
  • Solid

Thank you

Many thanks to our connect coordinators, volunteers and all that came out ot the session as well as to go the distance or support runners during Houston Marathon Weekend.

We look forward to seeing you on the road this year at one of our upcoming stops.

 

*Registration typically opens 1-2 months prior to each event. Visit EndDuchenne.org/Tour for more details and make sure you are signed up to receive emails from PPMD to be notified when registration opens.

Join Our Mailing List