- Phone: (904) 686-8515
- Email: contact@teachrare.org
Just as Rylae-Ann was finally getting back into her school routine after recovering from a lung infection and severe bronchitis, Bangkok received nearly 300 mm of rain in 48 hours. Roads flooded, schools closed, and suddenly we were back to learning from home.
But if raising a child with ...AADC deficiency has taught Judy and me anything, it is adaptability.
So PT became “gym play.” The #BangkokFloods became a literacy lesson. A rainforest diorama turned into science class. We practiced presentation skills, worked through math, squeezed in family lunch between my meetings, and somehow kept learning, laughing, and moving forward.
Rare disease families become pretty good at changing plans. Therapies get canceled. Kids get sick. Development happens on its own timeline. And sometimes, apparently, your street becomes a river. 😂
We cannot always control what happens around us, but we can decide what happens next.
I share more about our unexpected week and what it reminded me about resilience in my latest AADC News column. ❤️
👉 Read Now: https://aadcnews.com/columns/rare-disease-family-showcased-adaptability-floodwaters-rose/
#AADCDeficiency #RareDisease #RareDiseaseFamily #Resilience #Adaptability #SpecialNeedsParenting #InclusiveEducation #Family #TeachRARE
Columnist Richard E. Poulin III's home became a classroom last week as rains drenched Thailand and the floodwaters encircled his house.
aadcnews.comDenny has specialists and a chance for a new lease on life with the gene therapy treatment, while his friends wish him the best of luck and a very happy birthday.
Denny Ladkani lives with Duchenne Muscular Dystrophy, a rare genetic disease that causes progressive muscle degeneration and weakness throughout the...
www.wcjb.comA rare disease doesn't mean everything has to be unique or special. Sometimes typical and normal are also greatly appreciated.
A Florida mother of one tells PEOPLE she is determined to give her son, who has an ultra-rare genetic disorder affecting fewer than 100 kids...
people.comReawaken has received the Literary Titan Book Award.
This recognition helps amplify a story rooted in rare disease, gene therapy, family, resilience, and hope.
We are grateful to everyone who continues to support our mission of helping rare disease families feel seen, informed,
🏆The Literary Titan Book Award🏆
We celebrate #books with captivating stories crafted by #writers who expertly blend imagination with #writing talent. Join us in congratulating these amazing #authors and their outstanding #novels.
#WritingCommunity
https://wp.me/p3cyvH-Wrm
One of my favorite parts of The Rare Journey Series is seeing science, family stories, and imagination come together through the incredible artwork of @lomakina.space . 🎨🧬
From AADC deficiency to Friedreich’s ataxia and now Duchenne muscular dystrophy, Anna has created a visual ...world that makes complex science feel approachable, warm, and exciting for young readers.
But look closely. 👀
Each illustration is more than simply beautiful. Hidden throughout the pages are little Easter eggs inspired by the real families behind each story. A favorite activity. A meaningful place. A family memory. A tiny detail that might seem ordinary to most readers but means everything to the people whose journey inspired the book.
That is what makes Anna’s artwork so special.
Every page helps teach the science, but it also reminds children that behind every rare disease are real people, real families, and wonderfully unique lives.
We are incredibly grateful to Anna for helping Prof. Hong and the red panda come alive, one rare journey at a time. ❤️
Which cover is your favorite?
#RareDisease #rarediseaseeducation #childresbooks #inclusiveeducation #rarediseaseawareness
📚 Book 3 in The Rare Journey Series is here!
Prof. Hong Explores Duchenne Muscular Dystrophy combines accessible science with Betty Vertin’s real family story to teach children about DMD, disability and inclusion.
Paperback & Kindle:
#DMD #RareDisease
Join me, Prof. Hong, on another unforgettable adventure in the Rare Journey series as we explore Duchenne muscular dystrophy, also known as DMD. Our...
www.amazon.comWe are proud to announce the third book in The Rare Journey Series: Prof. Hong Explores Duchenne Muscular Dystrophy. #duchennemusculardystrophy #raredisease #therarejourneyseries
📚 The third book in The Rare Journey Series is officially here!
We are proud to introduce Prof. Hong Explores Duchenne Muscular Dystrophy, inspired by the real-life journey of fellow Bionews author Betty Vertin and her extraordinary family.
Betty is a mother of seven, a writer,... an advocate, and a caregiver to three sons living with Duchenne muscular dystrophy: Max, Rowen, and Charlie. Their family’s story is filled with challenges, but also with love, humor, determination, and countless reminders that a diagnosis is only one part of a much bigger life.
Guided by the curious Prof. Hong, young readers will explore the science behind DMD, discover the important role of dystrophin, and learn how the condition affects muscles and movement. More importantly, they will meet a family that continues to pursue education, sports, music, and meaningful goals together.
This book was created to help children ask questions, understand disability, celebrate inclusion, and see the person beyond the diagnosis. It also includes child-friendly vocabulary and extension activities for families and classrooms.
Every rare journey begins with curiosity. Every discovery begins with a question.
Purchases from The Rare Journey Series help support children and families in the rare disease community.
Available now in paperback and Kindle: https://www.amazon.com/dp/B0HLPT1DZC/
#RareJourney #duchennemusculardystrophy #DMD #RareDisease #disabilityinclusion #childrensbooks #STEMEducation #teachrare
Join me, Prof. Hong, on another unforgettable adventure in the Rare Journey series as we explore Duchenne muscular dystrophy, also known as DMD. Our...
www.amazon.comEven after gene therapy, we continue to celebrate the small successes. Parents of children with challenges must keep this perspective. Small steps today lead to bigger gains later. It also helps you stay motivated and positive.
A spoonful of patience helps the medicine go down:
An illness required columnist Richard E. Poulin III's daughter to swallow pills for the first time — another skill unlocked for Rylae-Ann.
aadcnews.comRylae learns Chinese #aadcdeficiency #chineseclass
Sometimes the biggest milestones can look incredibly small to everyone else.
One month after Rylae-Ann received gene therapy for AADC deficiency, our family went out for Christmas dinner in Taiwan. During dinner, she reached for a fork, grabbed it, and launched it across the ...restaurant.
Judy and I cheered. 😂
I am pretty sure everyone around us thought we were terrible parents.
What they did not know was that before gene therapy, Rylae-Ann had never intentionally reached for, grabbed, and thrown an object like that. To everyone else, it was a flying fork. To us, it was a glimpse of what might be possible.
More than six years later, she can run, swim, read, ride horses, and do things we once could only dream about.
During a recent return to Taiwan, we walked past that same restaurant and the memories came flooding back.
Progress does not always arrive with fireworks. Sometimes it arrives disguised as a fork flying across a restaurant. ❤️
I share that memory in my latest AADC News column:
https://aadcnews.com/columns/looking-back-key-developmental-milestone-gene-therapy/
#AADCDeficiency #GeneTherapy #RareDisease #RareDiseaseFamily #DevelopmentalMilestones #Hope #Caregiving
A recent trip prompts memories of a special developmental milestone that changed everything for columnist Richard E. Poulin III's family.
aadcnews.com
