Sheryl Marrazzo

Title: Duchenne Mother, Grandmother and Advocate

Organization: 4 Jake's Sake | CureDuchenne

Bio: Sheryl lives near Boston, MA with her husband John and son Jake. She became a positive patient advocated when she learned her sons diagnosis of Duchenne at age 8. Finding out she was a carrier as was her daughter, it was also determined that her grandson Tyler also has Duchenne. This only spurred her advocation on more and ultimately led her to a job for community outreach with CureDuchenne. Her families motto is to #Dontlivethediagnosislivethelife and they try to do that every day!

2021 FUTURES Quality of Life Panel: Making Decisions

Focused on empowering families to make informed decisions about their child’s care / personal care across all junctures of the Duchenne journey.

John Brandsema, MD

Child Neurologist and Neuromuscular Section Head

Children’s Hospital of Philadelphia

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Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

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Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

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Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

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Christina Trout, RN, MSN

Advanced Practice Nurse, Neuromuscular Program

Department of Pediatrics, University of Iowa Stead Family Children’s Hospital

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Jennifer Wallace Valdes, PT

CureDuchenne Certified Physical Therapist

CureDuchenne Physical Therapy Program

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

2023 FUTURES Breakout Session: Growth and Transformation (ages 9-16)

Let’s discuss:

  • Growing pains and puberty
  • ​Introducing wheelchairs and equipment
  • ​Preparing for a bright future: confidence, independence, and hobbies
  • Neurology concerns
  • Cardiology concerns
  • Pulmonology concerns
  • Managing Mobility

Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

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Danielle Forrest, OTR, OTD

Occupational Therapist III

Children’s Health and Rehabilitation Services

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Dr. Aravindhan Veerapandiyan

Pediatric Neurologist

Arkansas Children's Hospital

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Oscar "Hank" Mayer, MD

Medical Director, Pulmonary Function Testing Laboratory Children's Hospital of Philadelphia

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Merick Yamada, MD

Pediatric Cardiologist Fetal Care Center Dallas | Neurology and Neuromuscular Care Center

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

éxito en la escuela

Una presentación interactiva enfocada en definir y construir su equipo en la escuela, abordando los matices de un IEP o plan 504 para una persona con Duchenne, y un ejercicio de juego de roles sobre cómo comunicar de manera efectiva las necesidades de su familia en una reunión escolar.

Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

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Jennifer Ramirez

Executive Director of Special Programs

Belton ISD

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Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

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Spreading Wisdom - diagnosed 6+ years

Success at School

An interactive presentation focused on defining and building your team at school, addressing the nuances of an IEP or 504 plan for an individual with Duchenne, and a role-playing exercise on how to effectively communicate your family’s needs in a school meeting.

Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

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Jennifer Ramirez

Executive Director of Special Programs

Belton ISD

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Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

The Benefits of Corticosteroids Along the Duchenne Journey

CureDuchenne is joined by Dr. Aravindhan Veerapandiyan, a Pediatric Neurologist from Arkansas Children’s Hospital, and Sheryl Marrazzo, a mother, grandmother and advocate in the Duchenne Community, for a 1-hour webinar on corticosteroids. This webinar discusses the role of corticosteroids in the Duchenne standards of care, highlights the effects of steroids after loss of ambulation, and includes a discussion on how corticosteroids play a role in the family unit over time.

Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

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Dr. Aravindhan Veerapandiyan

Pediatric Neurologist

Arkansas Children's Hospital

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Video
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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years