Muscular Dystrophy Genealogy Research Program - MDGRP

03/13/2025

03/13/2025

03/13/2025

Read about the importance of speech therapy for spinal muscular atrophy patients with difficulties in swallowing, chewing, or speaking.

03/13/2025

Amyloidosis, which has several types, is diagnosed in at least 4000 Americans per year.

02/20/2025

The liver appears to be an early target of SMA, according to new research out of Canada. See how a better understanding of underlying disease processes could lead to better treatments: https://bit.ly/3QbI9We

02/13/2025

It is with great sadness that we share the passing of SMA advocate DeAnn Runge. Through her vlog, Dose of DeAnn, she offered a vulnerable glimpse into her life with the disease — from Jaco robotic arm challenges to service animal certifications. DeAnn’s storytelling and willingness to connect with the community have touched many, and our team is honored to have helped make her voice heard. We’re grateful her legacy will live on through the many videos she shared here. https://bit.ly/3WKqkBu

02/13/2025

Raising a child with an incurable, fatal condition, where he lost his ability to walk at age 11 turns your entire World into one where you eat, sleep and breathe awareness and accessibility.

Jason was born at the Seychelles hospital 13th September 2006.
10 fingers, 10 toes a perfect little bundle of joy.

Toddler stage
Little did we know that his delayed milestones was in fact Duchenne muscular dystrophy.

A Mommy can sense when there is something not quite right with her child and so it was incredibly frustrating to hear that I need to relax and that everything will be fine and that Jason will catch up.

Delayed speech, frequent falls, huge calves, toe walking struggling to drink from a cup, all symptoms of Duchenne.

Age 6, I took Jason to a GP for the flu. Dr noticed Jason’s waddle as we left his room and he called us back and asked that Jason squat to which I quickly replied, “Dr he can’t”

The Dr scribbled the word Duchenne on a post it, slid it across the desk and asked me to read about it, possibly have Jason tested.
I remember excitedly asking the Dr if this will help Jason catch up. Dr just calmly said to research.

Testing in Johannesburg confirmed what we feared.
Our world was turned upside down.

The protein you and I have called dystrophin that helps repair our muscles and keeps them strong is missing resulting in Duchenne. Example a person with Duchenne shouldn’t jump on a trampoline, terribly sad for a child.

It affects all the skeletal muscles, heart, lungs and the brain, cognitive and behavioural issues can occur.

Jason has also been diagnosed with Asperger’s at a young age.

Although he fights this terrible condition everyday he does it was with so much positivity, his laugh is so contagious and everywhere he goes he attracts people to his amazing personality.

Having to at the age of 18 still help your child in and out of bed, the shower, the car shows you just how much we take these everyday movements for granted.

Jason is fortunate to have accessible and specialised equipment at home as well as transport.

I want the same for all Disabled Seychellois. The reason why my Association Ramp Up, Rise Up was initiated. Creating accessibility. Providing ramps in all establishments for the Elderly & Disabled.

SeyMobility has been a dream, it’s finally here. To safely and comfortably transport the Disabled without them having to be transferred out of their wheelchairs. We all transport the disabled who do not use wheelchairs.

It’s done with passion, love and care.
Every client is fragile cargo and deserves to be driven around in luxury.
Short trips and excursions we will make it happen.

Thank you for your support especially for Jason. He is quite famous now from appearing on TV and the newspaper so it’s great when people come up to say hello.

I will finish off by saying that anybody can become disabled today, tomorrow, accidents happen so quickly. Let’s raise awareness and push for new developments to be accessible as well as provide accessibility where we can in older establishments.

www.SeyMobility.com

Love & light,
Duchenne Mama,
Christine

Chairperson Ramp Up, Rise Up Association
Owner of SeyMobility

SeyMobility
Jason's journey with Duchenne

02/06/2025

Do you have a child or family member with Muscular Dystrophy? Would you like to know where it came from? I will do your Genealogy for free and tell you who the first person who had it is and what possibly caused it. All I need is your child's name , your name, parents and grand parents names, birthday, place born, if they are still living. I'll need your last dead, because ancestry only shows death certificates and other needed info on the dead. That's it! No money ever! I'll send you a link after, so you can see it all for yourself. All participates must be in the United States.

Send a message to learn more

12/09/2024

Last month, families from around the world came together for PPMD Together: Virtual Edition. This unique virtual gathering provided families a space to connect, share their experiences, and find support from one another as they navigate the daily challenges of living with and . Catch up on the topics we covered: https://www.parentprojectmd.org/catch-up-on-ppmd-together-virtual-edition-a-gathering-of-families-for-connection-support-and-growth/

12/09/2024

Tune in to the latest episode to hear Carrie Manriquez’ open up about her personal experiences as a parent and caregiver to an adult son with SMA type 2, the importance of connecting with the SMA community, and helping Ryan Manriquez transition to adulthood. https://bit.ly/46DkR1T

12/09/2024

Jingle all the way! 🎄Our Inclusive JOY sweatshirts are selling quickly so order yours asap - and they’re on sale! 🎁 Thank you for sending this pic and being our gorgeous model ❤️

12/09/2024

Mayo Clinic researchers participated in the clinical study program of cretostimogene grenadenorepvec, which is designed to help people with bladder cancer who don’t respond to traditional treatment called BCG. This oncolytic immunotherapy targets and destroys cancer cells while simultaneously boosting the immune system.

Key findings:
• Nearly 74% of patients experienced complete cancer remission.
• Many remained cancer-free beyond two years.
• Most avoided bladder removal surgery.
• Well-tolerated with minimal serious side effects.

Learn more: https://mayocl.in/3CYCPm2

12/09/2024

The key is not to prioritize what's on your schedule, but to schedule your priorities. Our ambassador shares his story!

12/09/2024

Vitamin D has many crucial jobs in your body, but many people don’t get enough of the important nutrient. Top food sources include: https://wb.md/3OvGBpa

12/09/2024

Did you know large calves (scar tissue from the breakdown of muscle) and frequent falls are symptoms of Duchenne muscular dystrophy?

12/09/2024

Celebrating my 9th year on Facebook. Thank you for your continuing support. I could never have made it without you. 🙏🤗🎉