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.

The purpose of this protocol is to provide clinicians information regarding the safe management of corticosteroid during emergency situations in patients who may have accompanying adrenal suppression. The protocol explains how to recognize the signs and symptoms of acute adrenal crisis, how to prevent it with supplemental stress doses of corticosteroids, and how to taper doses after emergency care in order to prevent corticosteroid withdrawal.

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

Panel Facilitator

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.

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.

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.

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.

Guest Speaker

Ruth Bodenheimer is a homeschooling mom to five children, one of which is her 10 year old son, Zeke, who has Duchenne muscular dystrophy. Zeke is a complex medical case having been born with gastroschisis followed by his Duchenne diagnosis at nine months old. These complexities have resulted in numerous hospitalizations and surgeries. In her free time, Ruth enjoys connecting with other Duchenne families and sharing her experiences as a caregiver to a child with Duchenne. Ruth, her husband Joshua, and their children live north of Pittsburgh, Pennsylvania.

Guest Speaker

Amy Aikins has been led to her current professional career path from her experience as a mother to a young man with Duchenne muscular dystrophy. She has utilized her personal experience navigating systems and overcoming barriers for her son to assist others.

Amy has worked in various capacities within both public and private non-profit organizations focused on serving individuals with disabilities. She has a passion for helping people obtain access to the things they need and has extensive experience with coordinating community supports, locating and arranging necessary paid services, and navigating benefits. In past roles, she worked in case management as both caseworker and supervisory staff, coordinated an insurance counseling program for Medicare beneficiaries, worked in mental health administration, and held responsibility in the administration of a Medicaid waiver program for individuals with developmental disabilities within county government. Amy is also an active board member with Remember the Girls, an organization focused on supporting women who carry x-linked disorders.

In her current role as Director, Patient Access with Little Hercules Foundation, Amy tackles treatment access concerns through extensive engagement with a variety of stakeholders, as well as involvement in various groups and projects focused on access issues within the rare disease community. She regularly works directly with individuals and families to address individual access barriers.

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.