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Stories of Strength

Program Overview

Stories of Strength brings together personal stories of people living with Duchenne and healthcare providers who share their perspectives on treatment with DUVYZAT.

Learn how they overcome obstacles and embrace life with the support of their care teams and communities.

Join us for DUVYZAT Stories of Strength events!

Are you interested in hearing firsthand experiences from people living with Duchenne, along with insights from healthcare providers? Attend the latest DUVYZAT Stories of Strength events to hear their stories.

See available events >

Meet our DUVYZAT speakers

The following bios reflect personal experiences with DUVYZAT. Individual results with DUVYZAT may vary.

Susan C.

Susan C., caregiver to Ryan Michael

Susan is a devoted mother and caregiver to her son, Ryan Michael, who was diagnosed with Duchenne muscular dystrophy when he was 8 years old. After advocating for his participation in a clinical trial, she has continued supporting him since he started treatment with DUVYZAT in 2019.

Over the years she has become a trusted resource for other families navigating treatment and daily life with Duchenne. Susan draws strength from Ryan Michael's determination to learn, explore, and connect with others—qualities that have helped her step out of her own introverted shell.

As his needs have evolved, she has grown stronger too, supporting him physically and emotionally through the challenges of Duchenne. Together, they stay active in the Muscular Dystrophy Association® Let’s Play online gaming community, where they connect with other families, share encouragement, and find understanding.

Join us for an event! Register to hear Susan speak. REGISTER NOW
Ryan Michael C.

Ryan Michael C., living with Duchenne and taking DUVYZAT

Ryan Michael is 17 years old and has been living with Duchenne muscular dystrophy for nearly a decade. After joining the clinical trial in 2019, he began treatment with DUVYZAT. Today, he continues to take DUVYZAT alongside steroids and heart medication, feeling positive about his care over the past 6 years.

As an ambassador for the Muscular Dystrophy Association® and active member in its Let's Play gaming community, Ryan Michael is known for his humor, resilience, and ability to make friends with everyone he meets. He serves as his high school basketball team's manager, is working toward becoming an Eagle Scout, and takes pride in his strong grades—especially in math.

He credits his doctor's kindness and encouragement with making a lasting impact on his journey. Ryan Michael's determination and infectious spirit inspires others in the Duchenne community to know they are not alone.

Join us for an event! Register to hear Ryan speak. REGISTER NOW

Sign up for upcoming events

Hear from Susan & Natalie Goedeker, DNP, CPNP

Join us for the first DUVYZAT Stories of Strength event to hear from Natalie Goedeker, DNP, CPNP. Dr. Goedeker will be discussing her experience with Duchenne muscular dystrophy (DMD), the diagnosis process, the importance of early detection, and emerging treatment options. Susan, mother and primary caregiver to Ryan who is living with Duchenne, will also be sharing her experience with Duchenne and DUVYZAT, as well as discussing helpful resources and available support networks. Don’t miss this opportunity to connect with those living with and treating Duchenne!
Name: Susan & Natalie Goedeker, DNP, CPNP
Stories of Strength
10/23/2025 1:00 PM
Register for this event
Real Patient Experiences About Duchenne

Event Registration

Date: 10/23/2025

Time: 1:00 PM

Name: Susan & Natalie Goedeker, DNP, CPNP

*Required field.
More than 1000 people with Duchenne are currently being treated with DUVYZAT.‡ ‡Data as of July 2025.
Stories of Strength

Hear from people living with Duchenne and from healthcare providers at our DUVYZAT Stories of Strength events.

HEAR THEIR STORIES

Important Safety Information

What is the most important information I should know about DUVYZAT?

  • Low platelet counts in your blood (thrombocytopenia). Platelets are important for blood clotting, so having fewer can increase your risk of bleeding or bruising. Your doctor will check your blood count before you start DUVYZAT and regularly during treatment for signs of thrombocytopenia. Call your doctor right away if you notice unusual bleeding or small red or purple spots on the skin.
  • Increased levels of fat (triglycerides) in your blood. You may not have any symptoms, so your doctor will do blood tests before you start DUVYZAT and regularly during treatment to check your triglyceride levels.
  • Frequent watery loose stools (diarrhea) and vomiting. DUVYZAT can cause vomiting and moderate to severe diarrhea. If diarrhea occurs, you should keep track of the frequency and severity of your diarrhea symptoms, drink plenty of fluids, and contact your doctor.
  • If thrombocytopenia, increased triglycerides, or diarrhea cannot be managed, your doctor may change your dose or stop your treatment with DUVYZAT, if needed.

Before taking DUVYZAT, tell your doctor about all of your medical conditions, including:

  • any heart problems or medicines you take that could increase your chance for irregular heart rhythms.
  • any bleeding problems.

Tell your doctor about all of the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Taking DUVYZAT with certain other medicines may affect each other. Taking DUVYZAT with other medicines can cause serious side effects. Do not start or stop other medicines without talking to your doctor.

What are the possible side effects of DUVYZAT?

  • DUVYZAT can cause serious side effects, including changes in the electrical activity of your heart called QT prolongation. QT prolongation can increase the risk of developing a type of irregular heart rhythm known as Torsades de Pointes. Call your doctor right away if you feel faint, have an irregular heartbeat, feel dizzy, or lose consciousness. See the section titled “What is the most important information I should know about DUVYZAT?” for more information about side effects.

The most common side effects (occurring in >5% of DUVYZAT-treated patients) included diarrhea, abdominal pain, low platelet levels, nausea/vomiting, high triglyceride levels, elevated temperature/fever, muscle aches, rash, joint pain, fatigue, constipation and decreased appetite.

These are not all of the possible side effects of DUVYZAT. For more information, ask your doctor or pharmacist.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

What is DUVYZAT?

DUVYZAT is a prescription medicine for the treatment of Duchenne muscular dystrophy (DMD) in people 6 years of age and older. It is not known if DUVYZAT is safe and effective in children under age 6.

Please see full Prescribing Information and Medication Guide.
More than 1000 people with Duchenne are currently being treated with DUVYZAT.‡ ‡Data as of July 2025.
Stories of Strength

Hear from people living with Duchenne and from healthcare providers at our DUVYZAT Stories of Strength events.

HEAR THEIR STORIES

Important Safety Information

What is the most important information I should know about DUVYZAT?

  • Low platelet counts in your blood (thrombocytopenia). Platelets are important for blood clotting, so having fewer can increase your risk of bleeding or bruising. Your doctor will check your blood count before you start DUVYZAT and regularly during treatment for signs of thrombocytopenia. Call your doctor right away if you notice unusual bleeding or small red or purple spots on the skin.
  • Increased levels of fat (triglycerides) in your blood. You may not have any symptoms, so your doctor will do blood tests before you start DUVYZAT and regularly during treatment to check your triglyceride levels.
  • Frequent watery loose stools (diarrhea) and vomiting. DUVYZAT can cause vomiting and moderate to severe diarrhea. If diarrhea occurs, you should keep track of the frequency and severity of your diarrhea symptoms, drink plenty of fluids, and contact your doctor.
  • If thrombocytopenia, increased triglycerides, or diarrhea cannot be managed, your doctor may change your dose or stop your treatment with DUVYZAT, if needed.

Before taking DUVYZAT, tell your doctor about all of your medical conditions, including:

  • any heart problems or medicines you take that could increase your chance for irregular heart rhythms.
  • any bleeding problems.

Tell your doctor about all of the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Taking DUVYZAT with certain other medicines may affect each other. Taking DUVYZAT with other medicines can cause serious side effects. Do not start or stop other medicines without talking to your doctor.

What are the possible side effects of DUVYZAT?

  • DUVYZAT can cause serious side effects, including changes in the electrical activity of your heart called QT prolongation. QT prolongation can increase the risk of developing a type of irregular heart rhythm known as Torsades de Pointes. Call your doctor right away if you feel faint, have an irregular heartbeat, feel dizzy, or lose consciousness. See the section titled “What is the most important information I should know about DUVYZAT?” for more information about side effects.

The most common side effects (occurring in >5% of DUVYZAT-treated patients) included diarrhea, abdominal pain, low platelet levels, nausea/vomiting, high triglyceride levels, elevated temperature/fever, muscle aches, rash, joint pain, fatigue, constipation and decreased appetite.

These are not all of the possible side effects of DUVYZAT. For more information, ask your doctor or pharmacist.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Indication

What is DUVYZAT?

DUVYZAT is a prescription medicine for the treatment of Duchenne muscular dystrophy (DMD) in people 6 years of age and older. It is not known if DUVYZAT is safe and effective in children under age 6.

Please see full Prescribing Information and Medication Guide.