The Jett Program for Pediatric Neuromuscular Disorders at MGHfC

Coordinated Care for Children with Duchenne Muscular Dystrophy

and other Neuromuscular Disorders

Jett Foundation Family Advocate

The role of the Jett Foundation Family Advocate is to assist the DMD family with navigating through the process of accessing healthcare and supportive services for the whole child and family with Duchenne Muscular Dystrophy.

With parental consent, the Jett Foundation Family Advocate, Christine McSherry, RN, seeks to provide professional yet compassionate review of each family’s unique situation and offers an ongoing relationship providing information, access to support networks, guidance, advocacy and emotional support. Specific tasks may include:

• Explain the various tests that might be ordered by the physician – what to expect for the procedure and what information will be gained by the test
• Offer an overview of what to expect by coming to MGHfC and the Jett Program
• Use layman’s terms to explain the various protocols for treatment and offer support as family chooses course of action right for their situation
• Serve as a parent advocate if communication is difficult
• Offer emotional support
• Make suggestions and referrals for services, support groups and information
• Communicate with parents and families about DMD research taking place at MGHfc, including clinical trials
• Facilitate a network of DMD families offering support to each other (Jett Parent Association)
• Help to make connections between family and the services they may need in their community
• Presentations, education and advocacy in classrooms and in school districts to help child access services and support they need
• Help to secure equipment as needed
• Serve as a resource for other families
• Coordinate network of DMD families in Greater Boston and the Northeast

For more information, contact Christine at 1-877-FLY-JETT (359-5388).

Here are links to useful tips and information about caring for a child with DMD.

The Individualized Education Program (IEP)

A Blueprint for Ensuring School Success: An IEP outlines the services and accommodations a child with physical, cognitive or other special needs requires to succeed in school. Even if your son with DMD has not yet begun to manifest symptoms – or if symptoms are still slight - you should begin the conversation with your school about an IEP as early as possible. There may be services he can take advantage of now that will help lay a solid foundation for the coming years. Read the article….

Tips on Caring for Your Child with DMD

Recently there seems to be a surge as many new supplements are being tried on boys with DMD, also some FDA approved drugs are being used in an effort to help reduce the symptoms of Duchenne, to that end, parents need to be careful while on these uncharted waters. Read the article….

Navigating the World of Supplements and Medications for Duchenne Muscular Dystrophy: A Parents’ Guide

This article has advice and tips for parents who are experimenting - or thinking about experimenting - with supplements or the off-label use of FDA-approved drugs for DMD. Read the article….

Keeping it REAL…Hope for TODAY

This article promotes a proactive multi-disciplinary approach to care of a child with DMD and how to be an advocate for your child. Read the article….

There are research efforts throughout the world that are focused on finding effective treatments for DMD that will prolong and greatly improve the quality of life. Another source for information on the latest DMD therapies is the Parent Project Muscular Dystrophy website.

Jett Foundation    1-877-FLY-JETT    FAX 781-826-9523    jettfoundation@aol.com