Before you read on, don’t forget to check out Part 1 of our interview with Jennifer Wallace Valdes, PT. In Part 1, Jennifer discusses her background, what Duchenne muscular dystrophy (DMD) is, and some information on the CureDuchenne Certified Occupational Therapist program. Today, she expands on the program and how to apply, explains the challenges and rewards of working in this field, and offers advice to those who are newly diagnosed. 

CureDuchenne Certified Occupational Therapist Program: An Overview

Ensuring that occupational therapists are prepared to handle the needs of patients with DMD is crucial; this is why CureDuchenne, and Jennifer, developed the Certified Occupational Therapist program. This certification program will provide training on the most current standards-of-care. Jennifer shares:

In terms of training, all therapists must take a continuing education course that must be completed and passed. They also have to read five pre-assigned, peer-reviewed articles and take an examination on the information learned. After they sit for the exam and pass, we can certify them. To maintain certification, they must abide by recertification standards each year. They have to prove that their license is still in good standing, notify us of any changes in records, attend four professional webinars yearly, and read and take a quiz on at least four research articles. Our goal is that everyone certified by CureDuchenne is staying up-to-date on their knowledge since the field is always changing.

Some of the new changes in the field, for example, include pharmaceutical changes, more information available on what exercises can and cannot be done, and technological advances. For example, a smart home environment can help people become more independent at home. Jennifer also shares that CureDuchenne ran a webinar on robotic arms, a huge upcoming field that makes people more functional and independent.

Applying to the Program

When applying to the program, applicants must submit their license verification, a resume as well as a statement about their experience with DMD. Are they new to Duchenne? Do they have significant experience? Ultimately, this information will be kept on file to answer family and parent questions. Jennifer says:

We want this to be a benefit for the families as well as the therapists.

There is no limit to how many individuals CureDuchenne will admit to the Occupational Therapy program. They are happy to train as many people who qualify and pass the certification standards. This program is also open to occupational therapists outside of the United States. The program’s major launch will be an in-person course in Manhattan on November 12, 2022. However, certification will also be available to those who would like to pursue the program solely online.

For more information on the program, and to learn how to apply, head to CureDuchenne.

How does this complement the PT program?

One of the main elements that Jennifer stressed was how the Occupational Therapy program complements the Physical Therapy program. She shares:

These programs, in tandem, complete the circle of care for DMD therapy. Hopefully, some of the PTs that we’ve already certified will recommend this program to OTs in their clinic. We’re both on the same page working towards change. We’ve had pretty irrefutable success with the PT certification and have seen the benefits while working with patients. That’s amazing and we’re so thrilled to have helped so many people. But this doesn’t end with physical therapy. People with Duchenne need occupational therapy as well, so it was a natural extension of the program.

To ensure that the program was appropriate for occupational therapy, Jennifer bought in an expert OT consultant.

The Challenges and Rewards within this Field

As many people within the rare disease community know, there are challenges – and sometimes benefits – along the journey. For some, the challenges outweigh the benefits. However, that is what CureDuchenne is working to address: making this journey easier and more supportive. In terms of the challenges Jennifer has faced during her career, and in launching these programs, she explains:

Duchenne is so common to me, but it’s still a rare diagnosis. It has sometimes been challenging to find therapists who are interested in this topic, to reach out to them and get them on-board. Many OTs and PTs go their entire career never meeting someone with Duchenne. We want to find people who don’t know what to do, who are struggling to find help, and show them that we have the information they need.

Despite these challenges, Jennifer remains grateful for her experiences within the DMD world and for the people she has met. She says:

I get to work with some of the best families. Duchenne mostly affects boys; I can talk about Legos and Star Wars all day long. I love that I get to hopefully change the lives of the people on my caseload. The most satisfying part is that we’ve been able to multiply this effect exponentially by training other therapists. Without CureDuchenne, the benefit I could provide would be stunted. So much of our funds go towards research and advancing treatments. But our founders saw the importance of the care and support aspect.

Advice for the Newly Diagnosed

Getting a rare disease diagnosis can be incredibly difficult, sometimes scary, and, at some points, isolating. But if you are grappling with a new diagnosis, you are not alone. There are many people who are willing to help. Says Jennifer:

Getting a diagnosis is completely overwhelming, and then it’s more overwhelming when families dive in and get all of this information on what they should or shouldn’t be doing. Families should start PT early but you should make sure to find the right one. It’s frustrating, but if you don’t have someone doing the correct thing, you need to educate them if they’re open to it or find a new therapist

She also urges families to contact CureDuchenne for more information. As shared early, CureDuchenne has many resources available for families, caregivers, patients, and other stakeholders alike. The organization also offers 1-on-1 phone calls to explain the DMD landscape, research and care. Jennifer says:

Some people don’t want to reach out or aren’t in the right place for it. We understand that! If you’re not ready to reach out, you can look at our website and find videos, handouts that can be forwarded to the school or therapists, and other resources. If you are, our 1-on-1 program is really a great way to unwind that overwhelming information. Just know that we are here for you.