November 2017
Together we can Cure Duchenne!
Family Summit Atlanta

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CureDuchenne Cares held a Regional Family Summit in Atlanta, Georgia on Saturday, November 11. This event drew in families from Florida, Georgia, Louisiana New York, North Carolina, Tennessee, Texas, Utah and Nigeria. A total of 20 families traveled to this session to learn from professionals, engage with one another and to feel empowered to seek exemplary care for their loved ones.

CureDuchenne’s CEO and Founder Debra Miller opened the conference with an introduction to CureDuchenne. She discussed the organization’s impact along with our mission and core values. After, she thanked our generous sponsors and the families for being present at the event.

The first part of the program included presentations from physicians specialized in Duchenne.

  • Dr. Sumit Verma, MD who is the Medical Director of Neuromuscular Clinic at Children’s Healthcare of Atlanta gave an introduction to CHOA Neuromuscular Clinic.
  • Dr. Meg McKane, MD from Sibley Heart Center spoke on Duchenne cardiomyopathy.
  • Dr. Tamara Zagustin, MD of Pediatric Rehab Medicine at Children’s Healthcare of Atlanta presented on steroids standards of care.
  • Dr. Jonathan Popler, MD is a Pediatric Pulmonologist at Scottish Rite presented on Pulmonology in relation to Duchenne.

Next, Dr. Joe Kornegay, DVM, PhD gave an overview and update on his preclinical drug development for Duchenne. 

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The main session ended with CureDuchenne’s Chief Scientific Advisor Dr. Michael Kelly, PhD, giving families an update on clinical trials and research. This session gave way for parents to ask mutation-specific questions and better understand the efforts of science to treat Duchenne in all areas. 

When asked if the event empowered them to take further action, one parent stated, “Yes, to look into different clinical trials and to continue to connect with families.”

The program included valuable information for both younger, newly diagnosed boys, as well as those transitioning into adulthood. During the latter part of the day, the group was divided into two groups- one for those with younger/newly diagnosed boys, and the other for those transitioning into adulthood.

In the younger/newly diagnosed group topics included finding resources for families, physical and occupational therapy for Duchenne and families helping families.  The Adolescent and Adult session included presentations on nutrition, adapted driving and transitioning to adult care. 

Overall, the day was full of great insight on what to expect living with Duchenne, and offered valuable solutions to improve care for boys living with Duchenne.

“I actually have hope for the first time since my son’s diagnosis” said a mother.

“I learned that I need to take a more proactive approach to this disease” stated another parent.

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While the families and caregivers sat in session, the children who attended had a fun-filled day planned just for them. Their day began with a Big Thinker’s science presentation which allowed all to experiment making slime and cotton candy. Next, Be A Star Entertainment provided an engaging Danceheads activity, where the kids were digitally placed in music videos and action adventures. The final activity of the day included Mr. Tom from the North Georgia Zoo who brought his favorite furry, scaly and friendly animals for the children to learn about. Overall, the crafts, games, movies and activities kept the kids entertained and having a great deal of fun! 

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The CureDuchenne Cares Regional Family Summit in Atlanta, GA would not have been possible without the support of our sponsors: Pfizer, PTC Therapeutics, Santhera Pharmaceuticals, and Sarepta Therapeutics. Each biotech company had a chance to present updates on their research and current or upcoming clinical trials. 

In regards to the presentations, a mother of a son with Duchenne stated, “Really just re-motivates me to continue to advocate, communicate and participate in studies and drug trials.”