TeachRare’s Physical Therapy Event – Promoting Inclusivity and Access to Education for All
Richard Poulin IIIOn February 19th, Teach RARE and Hrabrisa launched the first event in Caregiver Lifestyle Series. This month was chosen in honor of Rare Disease Day. The event brought together 122 guests from 12 different countries! NORD reports on more than 7,000 rare diseases, but each affects less than 1 in 2,000 people.
We were excited about the response and are determined to improve and provide even more support.
Here is a review of the event and key takeaways. We have included a video of the event below. Additional translations are available for ten languages.
Presentation Courtesy of Wings Therapy and Learning Center
Wings Therapy Founder and CEO
We began our series by featuring Judith Julia Justin, the Founder, and CEO of Wings Therapy and Learning Center. Judith had an accomplished agency career. However, when her son Jake was born with the rare disease NACC1, her priorities shifted to his needs. Judith never thought she would be educated in physiotherapy and certified in innovative therapies, but she wanted action. This is only a glimpse of her story but a shared story from the founders of Teach RARE and Hrabrisa.
All of us are caregivers of children with a rare disease who began trying to make a difference in the lives of their own children and today work to support other families in the rare disease community.
Judith traveled the world and leaned from more than 100 intensive therapy seasons and ten years of education before starting Wings Therapy.
Wings Therapy Founder
Every child deserves the opportunity to achieve his or her full potential We aim to give children the wings to soar to greater heights, to be their best.
What makes Wings Therapy so special?
Our relationship with Judith began as we searched for therapy for our daughter. We were fortunate to receive a diagnosis after eight months. Once we knew what she had and better understood the symptoms, we wanted to take action.
However, we were expats and not eligible for many of the clinics in Singapore. The hospital physical therapy seemed limited. We researched strategies, approaches, and methodology. We found Wings Therapy.
After stepping through the doors and seeing the therapists in action, it only reassured us that the CEO was also a parent who knew our struggle.
Wings Therapy is the first and only therapy center in South East Asia to operate under the intensive model of therapy framework: frequency, intensity, and duration. Consistent Movement is their recipe for success. Creating this success depends on building a relationship with caregivers and extending the movement at home. This is at the core of Teach RARE’s mission and why we knew we had to have Wings Therapy lead our first session.
Physical Therapy Approach
The physical therapy approach brings together an array of break through therapies. Each is adapted to create a treatment plan for each individual. Approaches include LiteGait Training, Cuevas Medek Exercises, Spidercage Therapy, Suit Therapy/Neurosuit Therauit, Dynamic Movement Intervention, Universal Exercise Unit, Robotic Gait Traning (TREXO), and more.
Human Movement is Essential
Wings Therapy bases its approach on four key pillars: psychological, functional, musculoskeletal, and mental/emotional.
Movement improves circulation, preparation, digestion, cardiovascular, metabolism, and immunity
Movement supports activities for daily living, head control, sitting, crawling, and standing.
Movement prevents muscle atrophy and builds bone density and healthy joints.
Movement helps to improve mood and behavior regulation. It also improves hormonal regulation.
Holistic Improvement
Home Program
Incorporating physical therapy goals at home is the act of creating an routine exercise program for your child at home. There is a wide variety of exercises that you can do to achieve specific goals.
The exercises require caregiver support, and best if two caregivers work as a team. Exercises need to be effective and challenging.
Creating a Home Program
To create an effective program, you need to ensure you have regular professional monitoring of your child’s hips and spine. The exercises should match your child’s current ability level and the impact of their condition on their abilities. Next, consider the equipment you have available. After that, the age, body, and size of your child will also be considered. Since you are providing the care, your physicality also maters. Finally, what is your child’s current familiarity with movement.
Building a Schedule
A schedule is different for each family. However, you should have space out interval time that is dedicated to physical movement every day for your child. Here is a sample schedule:
Morning Routine
- Stretching: 20-30 min
- Tummy Time: 15-20 min
- Transitions: 10 reps
- Supported Standing: 40 min
Afternoon Routine
- Sitting to 4-Point: 10 reps
- Supported Stepping: 5 times
Evening Routine
- Supported Standing: 40 min
- Supported Stepping: 5 times
Benefits of Exercises:
Prevents: Surgery, Dysplasia of Joints, Need for Medication
Most Effective Home Exercises
Full Body Weight-Bearing Exercises
- Improve Joint Stability
- Improved Musculoskeletal Mobility
- Reduced Risk of Fractures & Other Injuries
Exercise Options
Level 2: Moderate support with caregiver or device
Level 3: Minimal support by leaning against objects
Crawling & 4-Point
- Left/right brain development
- Head control and neck strength
- Spinal and visual development
Exercise Options
Transitions
- Development of healthy joints, spine, and neck
- Independent and upright head control
- Visual development
Exercise Options
Level 2: Using care giver hands
Level 3: Minimal support by caregivers or brief moments of independent position.
Transition Examples
- Sitting to 4-point
- Sit to stand with hand support
- Sit to stand without weight-bearing on hands
Transitional Exercises
Online Workshop Video
For caregivers who could not attend or would like to review, please find the online physical therapy workshop video. Please consider subscribing to our YouTube Channel. Every like, comment, and share is motivation for us to continue!
We created a playlist for other languages. The video may begin in English but will switch to your language once the interpreter begins. Thank you for being so patient as we work to make an inclusive and accessible workshop for our global community.
View video translationsd
The WINNER is ...
Congratulations Rajka from Serbia! You won a copy of The Zebra Alphabet book, the first alphabet book dedicated to rare diseases by Dr. Aditi Kantipuly.
Congratulations Jovah from Brazil! You won a $50 gift certificate to purchase Billy Footwear, adaptive shoes with fashion by Billy Price.
