Owen’s Graduation from High School in 2025

Graduation is a big milestone and a proud moment for any parent. Witnessing my 18-year-old son living with Duchenne muscular dystrophy walk across the stage to receive his high school diploma was incredible.

My name is Nicola Worsfold, and I am the proud mother of Owen. My husband Ed and I live in Toronto with our two children, Owen and Emma. On June 25th, 2025, Owen graduated from Riverdale High School with honours. Watching him walk across the stage brought tears of joy and hope.

When Owen was diagnosed with Duchenne at the age of six, we were told he would progressively become weaker and likely lose his ability to walk in his early adolescence, and his life would be shortened to his 3rd decade.

At 18, Owen is thriving. He continues to impress his care team with his strength and endurance. He has big plans to attend college next year and move into a residence.

I am grateful for the support of my family and friends. I am humbled by the brilliance of our clinicians and researchers, who have played a critical role in Owen’s healthcare at Holland Bloorview, The Hospital for Sick Kids, London Health Sciences, The Children’s Hospital of Eastern Ontario, and the Strong Memorial Hospital in Rochester, NY.

I am thankful to have been able to give Owen access to clinical trials to give him hope of benefiting from the new potential treatments. I am empowered by the advocacy of our family, Defeat Duchenne Canada, and our healthcare teams, all of whom have made an incredible difference for our family and my son. Most importantly, I am in awe of my son Owen, his determination, his independence, and his refusal to let Duchenne define him.

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Spencer’s 1st Season in Adapted Sports

Participating in an adapted sport can be a powerful milestone moment for a child living with Duchenne Muscular Dystrophy (DMD). It represents more than just physical activity – it’s about independence, identity, confidence, joy, and belonging. It showcases what they can do, shifting focus away from limitations. Spencer is 6 years old, from London, Ontario. He was diagnosed with DMD and epilepsy last year.  In his toddler and preschooler years, Spencer tried a variety of activities from swimming, to soccer, to gymnastics, to blastball.

He always thoroughly enjoyed the social aspect of each sport, but we started to notice that he tired faster than the other children and developed frequent muscle pains after playing.  Just before his 6th birthday we received the shocking news that his body wasn’t like everyone else’s, because of Duchenne.

Through our local children’s therapy centre (TVCC) and word of mouth from other parents, we were introduced to a wide variety of inclusive and adapted sports. In particular, we discovered Volt Hockey and Challenger Baseball.

At first we were hesitant about the fit and the timing, given his very new diagnosis. However, we knew we were headed in the right direction when we saw the look on Spencer’s face at the first practice—-The excitement and confidence came rushing back! Unexpectedly, a competitive side of him started to shine through. It was a day when ability met opportunity, and confidence took a step forward. Spencer completed the full season of each sport, a first for him. He felt fully included in a team setting, where he could play in a way that suited his abilities. He made new friends and created memories that will last a lifetime. Thank you for showing us what true strength looks like.  We’re so proud of you.

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Eric’s Graduation from Carleton University

A big moment that happened for me this year was graduating from Carleton University with a Bachelor of Science in Biology and a Minor in Disability Studies.

It was a busy 6 years of university with 4 years of living in residence, and 2 years of online from home during COVID. It was a fun time of personal, educational, and professional growth.

What I am especially grateful for are the amazing people that work for the Attendant Services Program at Carleton, without whom I would not have been able to live in residence. They are an amazing team of individuals that I am certainly going to miss now that I have moved back home, and I will remember them fondly for the rest of my life.

I am also thankful to all of the wonderful people that worked on the drug trial that I was a patient of during my time at university. During my 4 years of living in Ottawa, I was involved in a clinical drug trial that was being done in London. For the first few years I had to be in London once every two weeks, where I would take a 5 hour VIA train ride from Ottawa to Toronto, do the hour and a half drive to London for the appointment, then drive an hour and a half home, and get back on the train for the 5 hour trip back to Ottawa, so about 13 hours in total. Luckily, for the last couple of years living in Ottawa I only had to go to London once a month, but it still took plenty of work and planning to be involved in a drug trial and also live in residence at university.

Looking back at how much effort it took to be involved in a drug trial in London and go to university in Ottawa, I would do it all again. When you live with Duchenne Muscular Dystrophy you learn to be resilient, and what looks like a lot of work eventually just becomes the routine and you learn to live with it. As someone who is directly impacted by the results of DMD research, I understand how important it is to do my part in moving the research forward, and finding a way to balance school and a drug trial was something I just needed to do, and it turns out, it is something I could definitely do.

I’m a little nervous now that a big chapter of my life has ended, but I’m also excited to see what the future holds.

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Kanch Turns 50 Years Old

I have been married for 22 years and my wife and I have three teenage children. A 17 years old daughter and twin 13 year old boys.

I was diagnosed with Duchenne muscular dystrophy when I was 8 years old. I have been taking Deflazacort since 16 years old and I have been using a power wheelchair fulltime since the age of 16 and more recently I have had a tracheostomy since 2013 and use a ventilator in the evening and overnight.

I have dedicated my life towards disability rights, accessibility and inclusion. My Duchenne diagnosis has had profound implications on my physical and mental health, but it has not stopped me from achieving my goals and living my life the way I want. I am looking forward to attending the Family Forum and especially learning more about the AGAMREE approval by Health Canada and the next steps regarding availability, specifically when my doctor can prescribe it.

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Jahan Graduates Elementary School

We’re the #ChahalPartyof5 — Daddy Harjinder, me (Natasha), our brave eldest Jahan (14) who lives with Duchenne muscular dystrophy, our strong and sassy Sahana (11), and our sweet little powerhouse Nishan (8).

This journey isn’t easy — some days are heavy, and the road feels long — but we’re surrounded by so much love, encouragement, and unwavering support from our beautiful family and friends. For that, we are truly blessed.

This year, I’ve watched Jahan carry hope on his shoulders. Now in his second year of a clinical trial, he faces each infusion, test, and challenge with courage that takes my breath away. The strength he shows isn’t just for himself — he carries the hopes of every boy who will walk this path after him.

Earlier this year, Jahan graduated elementary school, completing 10 incredible years surrounded by an army of teachers, staff, and friends who’ve always cheered him on. Before he left, he helped lead an unforgettable event with our amazing firefighter friend Brodie Grant — an interactive workshop inspired by “Running in Firefighter Boots.” Students learned what Duchenne means by walking  (literally) in heavy boots. What an amazing moment, Jahan — you made awareness real for so many!

When Jahan walked across that stage to receive his diploma, the auditorium was supposed to hold its applause until the end… but let’s just say this mom couldn’t wait!
Now, Jahan’s in high school, loving every minute — and maybe even the independence from me!

He’s 1 in 2,000, the only wheelchair user in his school, but he glides through those hallways with grace, humor, and pride. His light fills every room he enters.

This journey is filled with challenges — we lose time, we shift routines, and sometimes the weight of uncertainty feels like too much. But Jahan never loses his laughter, his spark, or his joy. He reminds me daily that courage doesn’t always roar — sometimes it’s the quiet voice that says, “I’ll try again tomorrow.”

Jahan (aka “Joogle”) can tell you the most fascinating facts about almost anything — but the one thing he teaches best is strength through kindness. To our Duchenne family — the fighters, caregivers, researchers, and dreamers — we see you, we thank you, and we walk beside you. Together, we keep believing. Together, we rise.

Jahan, you are pure light.
Your strength, your heart, your voice — they are changing the world.
And I am endlessly proud, humbled, and grateful to be your mom.
Here’s to more hope, more breakthroughs, and more unstoppable courage.

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Celebrating a Summer Wedding

We are excited to share a special milestone with you and everyone in the Duchenne community. On Saturday, August 30, 2025, our son Nathan tied the knot with his high school sweetheart, Abby. They had an incredible day celebrating with family and friends, and luckily, the weather was perfect too! Our son James and daughter Rebecca were truly honoured to stand with the couple as part of the wedding party.

We can’t wait to reconnect with all the families and DDC staff at the end of this month.

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What are you celebrating this year? Whether it’s another year of soccer, a graduation, or a special moment that brought your family joy, we want to hear it!

Submit your Milestone Moment by October 17 to be featured during a special celebration at the Family Forum.

Send your moment (with a photo or video if possible!) to:
[email protected]

Saturday, October 25

8:00 a.m.: Registration & Family Breakfast

9:00 a.m.: Welcome & 30th Anniversary Celebration

9:20 a.m.: Empowering Families Through Community, Care, and Research (introductory panel discussion with parents, researchers and clinicians)

10:05 a.m.: Adjusting to a New Diagnosis (a parent’s story)

10:15 a.m.: Coffee Break

10:30 a.m.: Navigating Your New Diagnosis (early care ages 0-8) 

12:00 p.m.: Research & Industry Exhibition Lunch *New This Year*

1:00 p.m.: The Duchenne Treatment Landscape (Part 1: steroids therapies, exon skipping, givinostat and satellite cells)

1:50 p.m.: Industry Partner Sessions (Kye Pharmaceuticals, Edgewise Therapeutics, Dyne Therapeutics, Avidity Biosciences, Wave Life Sciences)

3:05 p.m.: Navigating Clinical Trials (from a patient/family perspective)

3:30 p.m.: Coffee Conversations (Duchenne dads, Duchenne moms & Duchenne siblings – with ice cream! Exclusive for in-person attendees)

3:55 p.m.: Two Concurrent Sessions (exclusive for in-person attendees)

1. Childhood Care (ages 9-15: Neuromuscular, Pulmonary, Cardiology, Physical therapy, and Endocrinology)

2. Teen and Adult Care (Ages 16+: Neuromuscular, Pulmonary and Sleep Health, Cardiology, Transition Planning)

5:00 p.m.: Illness and Emergencies – What To Do

Kids & Teens Program *New This Year*

Highlights for this year’s program:

• Exciting ice-breakers to spark connections
• Adaptive sports for all abilities
• Creative arts projects to inspire imagination
• Hands-on STEM activities (science and building fun!)
• Martial arts & mindfulness to build confidence and calm

Sunday, October 26

8:00 a.m.: Research and Industry Exhibit Breakfast *New This Year*

9:00 a.m.: Welcome

9:15 a.m.: Keynote Speaker – Advocacy from the Heart: Telling your Story with Impact

10:05 a.m.: The Canadian Drug Approval Process and Where Your Voice Matters 

10:50 a.m.: Coffee Break

11:00 a.m.: Financial Planning & Planning for the Future

11:35 a.m.: Shared Learnings – Rick Hansen Accessibility Training

12:00 p.m.: Research and Industry Exhibit Lunch *New This Year*

1:00 p.m.: Navigating School and Employment (panel discussion with parents, teachers, and Occupational Therapists)

1:50 p.m.: The Duchenne Treatment Landscape (Part 2: gene transfer and gene editing therapies)

2:40 p.m.: Coffee Break

2:50 p.m.: Industry Partner Sessions (Solid Biosciences, REGENXBIO) 

3:20 p.m.: Weekend Closing

Kids & Teens Program *New This Year*

Highlights for this year’s program:

• Group games & activities
• Sensory exploration adventures
• Virtual reality & video gaming experiences
• Therapeutic puppies

Thank You to Our Speakers

1. Dr. Reshma Amin – Director, Sleep and Long-Term Ventilation, The Hospital for Sick
   Children (SickKids)
2. Alfred Breton-Paré – Clinical Research Associate, ICON Strategic Solutions & Duchenne Parent
3. Éloi Breton – Student, Pharmacy Technician
4. Dr. Craig Campbell – Chair of the Department of Pediatrics, Schulich School of Medicine & Dentistry – Western University, and Physician Executive, Children’s Hospital, London
   Health Sciences Centre
5. Mathias Castaldo – Youth Facilitator, Holland Bloorview Kids Rehabilitation Hospital
6. Brayden Cream – Accessibility Advocate, Graduate of Nova Scotia Community College (NSCC)
7. John Davidson – Co-Founder, Jesse’s Journey & Board Director, Defeat Duchenne Canada
8. Sherene Davidson – Co-Founder, Jesse’s Journey & Board Director, Defeat Duchenne Canada
9. Megan Dickson – Genetic Counsellor, The Hospital for Sick Children (SickKids)
10. Iris Garcia – Ambulatory Social Worker, The Hospital for Sick Children (SickKids)
11. Jennine Germond-Ditz – Co-Founder, I Have Resolve Foundation
12. Dr. Hernán Gonorazky – Director, Neuromuscular Fellowship Program, The Hospital for Sick
    Children (SickKids)
13. Dr. Evgueni (Zhenya) Ivakine – Scientist, Genetics & Genome Biology at The Hospital for Sick Children (SickKids)
14. Dr. Charles Kassardjia – Staff Neurologist, St. Michael’s Hospital; Assistant Professor, University of Toronto
15. Joanne Koskie – CEO, EMPOWER Advocacy
16. Laurie Liscumb, RN, BScN – Clinical Nurse, Holland Bloorview Kids Rehabilitation Hospital
17. Dr. Laura McAdam – Physician Director, Ambulatory Care, Holland Bloorview Kids Rehabilitation Hospital; Clinician Investigator, Bloorview Research Institute
18. Charise McDonald – Occupational Therapist, Holland Bloorview Kids Rehabilitation Hospital
19. Eric Morden – Board of Directors, Defeat Duchenne Canada, Accessibility Advocate, Graduate
    of Carleton University
20. Nadia Niles-Campbell – Occupational Therapist, Holland Bloorview Kids Rehabilitation Hospital
21. Dr. Adam Rapoport – Medical Director, Pediatric Advanced Care Team (PACT), The Hospital for
    Sick Children (SickKids)
22. Kristin Ranchigoda, RN – Clinical Nurse, Holland Bloorview Kids Rehabilitation Hospital
23. Dr. Lucy Roche – Staff Physician – Division of Cardiology, Toronto General Hospital
24. Jillian Sin – Physiotherapist, Holland Bloorview Kids Rehabilitation Hospital
25. Dr. Jacques P. Tremblay – Professor, Department of Molecular Medicine, Université Laval
26. Dr. Leanne Ward – Professor of Pediatrics, University of Ottawa; Scientific Director, Ottawa, Pediatric Bone Health Research Group; Pediatric Endocrinologist, CHEO
27. Nicola Worsfold – Executive Director, Defeat Duchenne Canada

Key Note Speaker: Rachel Callendar

Presented by Satellos Bioscience

Please welcome Rachel Callander, an international speaker, author, and healthcare communication consultant who helps healthcare providers build trust, compassion, and understanding with patients
and families.

Her work is deeply shaped by her experience of being a mom to her daughter Evie, born with a very rare chromosomal condition. This was a journey that gave her profound insight into navigating complex medical systems and the importance of language and communication in healthcare.

With a background in fine arts and an early career as an award-winning photographer, Rachel brings creativity and storytelling into her work in the healthcare sector. Her acclaimed Super Power Baby
Project book celebrates children living with a rare diagnosis and showcases her ability to see beauty and strength in every story.

Today, Rachel shares her expertise with hospitals, universities, and healthcare organizations around the world, helping clinicians communicate with kindness, clarity, and confidence.