April 4, 2019 / Community

End Duchenne Tour Recap: Omaha, NE

Parent Project Muscular Dystrophy by: Parent Project Muscular Dystrophy

PPMD had the opportunity to travel to Omaha, NE on March 30 for our second End Duchenne Tour stop of 2019. We were joined by over 50 people including 18 families, 9 industry partners, and 10 clinicians from the Children’s Hospital of Omaha. This group was extremely engaged, and it was amazing to see the support offered to one another.

We want to thank the Children’s Hospital of Omaha neuromuscular clinic team for partnering with us to host this event. This includes a special thank you to Melissa Fanning, RN Coordinator for helping us organize the day, as well as the clinic team members who provided wonderful presentations which are summarized below.

Join the Fight

  • Join the Race to End Duchenne Team at the Omaha Marathon on September 15: There are multiple race distances to choose from including the half marathon, full marathon, and 1 mile run. Help us raise funds and awareness by joining others who are also committed to ending Duchenne. For more information or to register, visit the Race to End Duchenne website or contact Nicole@parentprojectmd.org.
  • Stay in touch with the community by joining PPMD’s Connect, the official volunteer, parent-led outreach program of Parent Project Muscular Dystrophy. Become involved at both in person events and in a closed social media group made up of other Duchenne and Becker families. If you would like to learn more, you can reach them through email (ppmdconnectnebraska@gmail.com) or through the Facebook group.
  • The Decode Duchenne program, offering free genetic testing and counseling for people with Duchenne, is now available for carriers – learn more!

Research Updates

Research Overview

Geetanjali Rathore, MD (Children’s Hospital of Omaha)

  • Dr. Rathore gave a research overview presentation, explaining what clinical trials are, as well as what their timelines mean
  • She also gave a brief overview of each potential targets for Duchenne Therapy, and current trials happening in the space
  • Download presentation slides

Industry Takeaways

We would also like to thank our sponsoring industry partners once again for their support in the End Duchenne Tour. We received updates from the following:

Care Highlights

Navigating Challenges with School, Learning, and Behavior

Denise Gruender (ABC Educational Services)

  • Denise traveled with us to share her expertise about navigating challenges with school, learning, and behavior.
  • She met individually with families throughout the day to share tips, tricks, and resources to aid in homework, learning disabilities, home structure, sensory issues, and motivation problems.
  • To contact Denise, please email her office manager erika.g@abcedservices.com or by phone 704-443-2990.

Physical Therapy

Claudia Senesac, PT, PhD (University of Florida)

  • Claudia Senesac, PT, PhD also traveled with us from the University of Florida to present about Physical Therapy Standards of Care.
  • Through her presentation, she emphasized safe exercise and rest, flexibility and stretching, positioning, and mobility devices.
  • She met with families individually to offer resources and guidance on age-specific recommendations and issues.
  • Download presentation slides

Pulmonary

Casey Burg, MD (Children’s Hospital of Omah)

  • Casey Burg, MD presented on pulmonary standards of care for people living with Duchenne
  • Dr. Burg discussed pulmonary monitoring for people with Duchenne, including lung function tests and sleep studies.
  • He also explained noninvasive cough and breathing support options, and how they prevent illnesses and respiratory problems from happening.

Cardiology

Rob Spicer, MD, Jean Ballweg, MD, and Douglas Stoller, MD (Children’s Hospital of Omah)

  • Rob Spicer, MD, Jean Ballweg, MD, and Douglas Stoller, MD formed a panel to present and discuss cardiology standards of care
  • Dr. Spicer discussed current cardiology standards of care, emphasizing the importance of being followed by a cardiologist from the time of diagnosis, and encourages semiannual visits after age 10
  • Dr. Ballweg discussed current therapies to prevent heart failure, and encourages starting low doses of an ACE inhibitor before symptoms occur.
  • Dr. Stoller specializes in adult heart failure, and spoke about transitional cardiology care through adulthood for people living with Duchenne. In addition, he discussed the importance of cardiac evaluation and monitoring of carriers of Duchenne.
  • Download presentation slides

Psychosocial

Meaghann Weaver, MD, MPH (Children’s Hospital of Omah)

  • Meaghann Weaver, MD, MPH is a palliative care specialist who spoke about psychosocial considerations in Duchenne
  • Dr. Weaver spoke about extremely important, and often overlooked topics including pain management, transitional considerations, and the relationship between physical symptoms and mental health.
  • She discussed the comprehensive approach to support all aspects of both physical and mental health to improve quality of life.
  • Download presentation slides

PPMD & Community

About PPMD

Kathi Kinnett, MSN, APRN (PPMD)

  • Kathi spoke about PPMD’s core tenants including PPMD’s efforts in Care (including the Certified Duchenne Care Centers), Advocacy, Research, and Community Engagement.
  • One way to get involved and meet others in the community is at the PPMD 2019 Annual Conference June 26 – June 30 in Orlando, FL. As mentioned, we offer a Newly Diagnosed Scholarship for families with who have received the diagnosis after January 2017.
  • Download presentation slides

Genetics, Your Family, and The Duchenne Registry

Jen Ely, CGC  (PPMD)

  • Jen gave an overview of the genetics of Duchenne, explaining mutations in the dystrophin gene and what they mean.
  • She also spoke about Decode Duchenne and the importance of The Duchenne Registry. If you have not registered, please do. If you have registered, please update your information!

PPMD’s Connect

Susan Samuelson and Betty Vertin (PPMD Connect Nebraska Coordinators)

  • PPMD Connect Nebraska coordinators Susan Samuelson and Betty Vertin invite you to become involved in our parent-led volunteer outreach group at both in person events and in a closed social media group made up of other Duchenne and Becker families. If you would like to learn more, you can reach them through email (ppmdconnectnebraska@gmail.com) or through the Facebook group.

Race to End Duchenne

Betty Vertin, parent and Connect Coordinator, spoke of her experience running with the Race to End Duchenne team. Consider joining us on September 15 at the Omaha Marathon! There are multiple race distances to choose from including the half marathon, full marathon, and 1-mile run. Help us raise funds and awareness by joining others who are also committed to ending Duchenne. For more information, please contact Nicole@ParentProjectMD.org.

Thank You!

Thanks to the families, clinics and everyone else who helped make this day possible! Next End Duchenne Tour: April 27 in Portland, Maine!

Next Up

In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD’s End Duchenne Tour brings updates on research, advocacy, and care to cities across the country, featuring a roster of leading experts in the Duchenne space.

You have told us what topics are the most important to you and we have listened, using your feedback to inform our robust agenda at each tour stop. This is also an opportunity to connect with local families and, when possible, explore your area Certified Duchenne Care Center.

As always, each meeting is free with breakfast and lunch provided. Kids are also welcome to attend and participate in PPMD’s Kids Track.

Upcoming 2019 Schedule*

*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.

PPMD Annual Conference

Registration is officially open for the PPMD 2019 Annual Conference June 26 – June 30 in Orlando, FL. We hope to see you there!

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