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PPMD Visits South Africa to Help Spread Global Knowledge of Duchenne Care

As we quickly approach World Duchenne Awareness Day, on September 7, I am pleased to provide details on our team’s ongoing trip to South Africa.

 

Over the past 10 years, the Muscular Dystrophy Foundation of South Africa (MDSA) has sponsored three trips to South Africa by a team of experts chosen by PPMD, each trip fully funded by the MDF of South Africa. PPMD is honored to continue our working relationship with MDSA. Care is a pillar of PPMD’s mission and we welcome any opportunity to share our knowledge and thought leaders with an international audience.

 

Many years back Win Van der Berg, Colin McKenzie, and Maxine Strydom attended PPMD’s Annual Connect Conference. They requested our help to educate the families and physicians in their country. They were hopeful to improve the quality and life span of families in South Africa. In previous years, Doug Biggar, Helen Posselt, and Jonathan Finder initiated work with MDSA and today we continue this work.

 

We are thankful to the MDSA, which has been very generous in organizing, financing, and hosting us as we attend four different conferences in three different cities. And we feel motivated by the spirit of World Duchenne Awareness Day – the more we can educate the world about this terrible disease, the better we can improve the outcome of Duchenne patients around the world.

 

The communities of South Africa are composed of diverse, concentrated populations of various socioeconomic statuses. As is the case the world over, clinicians are trying their very best to do everything they can to care for their vast numbers of families, many of whom have great needs, with the resources available to them.

We were honored to be asked by the MDSA to put together an agenda that would be helpful for their community, and to be able to bring some of the U.S.’s most talented clinicians to a country desperately in need of improvements in diagnosis and care. While I realize that our challenges in the US are far from met, there are segments of the South African population who live daily with struggles that we can’t even imagine. 

 

The MDSA identified the need for learning more about comprehensive care, cardiology care, pulmonary care, physical medicine and rehabilitation and clinical trials. I was extremely fortunate to pull together an A-Team of experts in these areas. Our team includes: Tim Cripe, MD, PhD, Oncology (with many NIH grants and many years of clinical trial experience); Jonathan Finder, MD, pulmonology, Pittsburgh Children’s Hospital; Linda Cripe, MD, cardiology, Nationwide Children’s Hospital; Doug Kinnett, MD, Physical Medicine and Rehabilitation, Cincinnati Children's Hosptial Medical Center, and myself.

 

I am happy to report that the two conferences we’ve conducted since being here have attracted over 300 participants who, based on their questions, have been receptive to changing their practice (providers) and educating their caregivers (parents).

 

The topics discussed included:

  • Advocates of Neuromuscular Disorders
  • Multidisciplinary Care in Muscular Dystrophy and Neuromuscular Disorders
  • Clinical Trials and Parent information
  • Optimizing Physical Functioning and Care in Children with Duchenne
  • Care and Management of the Cardiomyopathy Associated with Duchenne
  • Respiratory Management of Muscular Dystrophy

Attendees (clinicians, therapists, students, patients, parents and advocates) embraced the messages about enhancing comprehensive care, which would not only impact the quality and quantity of life of people living with Duchenne, but would increase institutions’ ability to participate in clinical trials, bring even more resources to families living in this area. 

 

Next, we will be joining pediatricians from across Africa at the South African Pediatric Association (SAPA) conference and holding a local conference in Cape Town before returning home.   

 

We believe all of these advances will help move the greater Duchenne field forward, and will help South Africans play a growing role in addressing this terrible disease. We are pleased to be representing PPMD in taking another step in the global effort to END DUCHENNE.

 

 

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