Community Webinar: PJ’s Protocol Panel

When:
March 28, 2024 1:00PM

Join Jett Foundation’s Community Webinar Series on March 28 at 1PM EST to hear from a panel on PJ Nicholoff’s Steroid Protocol in Duchenne muscular dystrophy. We welcome individuals living with Duchenne, their families, healthcare professionals, or anyone interested in learning more about PJ’s Protocol.

PJ’s Protocol Panel
Thursday, March 28, 2024
1pm ET | 12pm CT | 11am MT | 10am PT

 

Gloria Orozco

Guest Speaker

Gloria Orozco is a mom of a 12 year-old boy with Duchenne muscular dystrophy. Her 14-year-old nephew also has Duchenne. Gloria is a manifesting carrier, as well as her 14-year-old daughter and her two sisters. Gloria has dedicated herself to raising awareness since 2012 when her son and nephew first received their diagnosis. Gloria often serves as a liaison between people and organizations to improve the quality of life for individuals and families affected by Duchenne. Currently, she volunteers for Family Friends and Duchenne organizations serving Spanish speaking families. 

Brian Nicholoff

Guest Speaker

Brian is a parent of two boys with Duchenne muscular dystrophy. One of his sons, PJ, passed away in 2013 at age 31. Justin is 36 years old and lives at home with Barb and Brian. Justin works 5 days a week in marketing at a local water supply company. He is still very active and stands at a counter for for a few hours per day, swims on a regular basis, and consistently does stretching exercises with Brian. Barb and Brian Nicholoff have been married for 45 years. Brian is a retired PGA professional holding positions as head golf professional and proprietor at clubs in Michigan and Indiana.
 
Barb and Brian have been actively involved since 1987 with MDA, Parent Project Muscular Dystrophy, and most recently with Jett Foundation.
Dr. Anne Marie Sbrocchi

Guest Speaker

Dr. Anne Marie Sbrocchi is an Associate Professor in Pediatrics at the McGill University Health Centre and is the Division Director of Pediatric Endocrinology.  She completed her undergraduate studies and medical school at the University of Ottawa, Ontario, and her pediatric residency and fellowship in Pediatric Endocrinology and Metabolism at McGill University in Montreal.  She completed a clinical research fellowship in pediatric bone health at both the Children’s Hospital of Eastern Ontario at the Shriners Hospital for Children in Canada, and currently works in the Shriners metabolic bone clinic. She is active in teaching, advocacy and clinical research.  Her work focuses on the comprehensive care of children with complex care needs, with a specialization in bone health and neuromuscular disorders. She is a steering committee member of the Canadian Consortium for Children’s Bone Health. She was named to the Faculty of Medicine Honour List for Educational Excellence at McGill University.

Kathi Kinnett, MSN, APRN

Guest Speaker

Kathi Kinnett joined the Parent Project Muscular Dystrophy (PPMD) team in 2012. She has over 25 years of experience as a nurse, the majority of which were spent at Cincinnati Children’s Hospital Medical Center, caring for more than 300 families living with Duchenne muscular dystrophy. During her time with PPMD, Kathi developed and directed PPMD’s Certified Duchenne Care Center Program, a program recognizing and certifying centers around the US capable of providing harmonized comprehensive care for Duchenne. There are currently 30 Certified Duchenne Care Centers and two Global CDCC in this growing network of care. In addition, Kathi has identified gaps in care and research, and has convened major meetings to address gaps in pulmonary, endocrine, cardiac care, psychosocial care, as well as the burdens of families participating in clinical trials. These meetings have been included clinicians, industry, FDA, NIH, CDC, parents and researchers from across the globe. She has served on the steering committee and author on the original and updated Duchenne Care Considerations and served on the AAP committee to develop and disseminate Duchenne care information to the primary care community. In her current role as Clinical Care Advisor, she continues to be invested in strengthening the outcomes of both care and clinical trials.

Community Webinar Series - Better preparing for challenges in Duchenne

Our Community Webinar Series is focused on ensuring that our Duchenne community is better prepared for those unexpected moments, challenging medical decisions, and difficult stages when on a Duchenne journey.

No one ever expects Duchenne and there is no correct way to tackle a diagnosis, but we can always better prepare. This webinar series is an opportunity to equip yourself with more knowledge, resources, and tools for those real-life, often unanticipated, scenarios.

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How is the rare disease community accomplishing goals?

Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

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