Giving Strength Inc

10/13/2026

A huge thank you to Scaffold Resource for hosting such a wonderful charity golf outing and for your generous donation to Giving Strength! ⛳️

Your support helps us continue advancing research and bringing hope to families affected by SELENON-related myopathy. We are so grateful for partners like you who make a meaningful difference in our mission! 💚

10/10/2026

💚💚💚

"I might look like I’m coping extremely well on the surface, but I still deal with pain, exhaustion and restrictions every day."

James lives with Becker muscular dystrophy (BMD), having been diagnosed as a child. For Becker Awareness Week and World Mental Health Day, he's shared his experience of coming to terms with his condition as a teenager, and the impact it has had on his mental health:

"When I was younger and first began experiencing the aches and pains, I avoided going to the doctor because I was scared.

"The aches and pains I began to suffer with more frequently caused my psychological health to worsen quicker than I thought I could handle.

"I was anxious most of the time. Some days I struggled just to walk into school and relied on my dad to take me."

At the moment, James' symptoms are invisible - but that doesn't make them any less real:

"I’m grateful the condition hasn’t progressed too much yet, but it also means people don’t always understand it.

"I’ve often had people say, 'You don’t look disabled,' which is hard because it makes you feel as if you’re less important than somebody who has visible symptoms and that they just think you’re being dramatic."

Having chosen to study Psychology, Biology and English Language at A-level, James is determined to try to help others living with muscle wasting conditions:

"I wanted to share my story to tell anybody struggling with a muscle wasting condition that life doesn’t have to be defined by your disability."

Read more: https://loom.ly/8Quh1Vk

09/13/2026

🎉 WHAT A DAY! 🎉
Thank you to EVERYONE who made the 3rd Annual Strides for Strength an incredible success! 💪💚

The rain held off just in time, and we were able to kick off the race with an amazing crowd, tons of energy, and so much heart! 🏃‍♀️🏃‍♂️☀️

A HUGE thank-you to Phaselock Engineering for sponsoring Strides for Strength again this year! We’re so grateful for your continued support. 🙌
And a special shout-out to Ruth's Chris Steak House for generously providing gift cards for our overall finishers! 🏆

But most importantly, this day would not be possible without YOU! ❤️

To every runner, walker, volunteer, friend, family member, supporter, and cheerleader — THANK YOU for showing up, spreading awareness, and making today so incredibly special.

Together, we’re taking Strides for Strength toward a brighter future! 💪✨
We can’t wait to see you all next year for the 4th Annual Strides for Strength! 🏃‍♀️💚

09/09/2026

💚 September is Muscular Dystrophy Awareness Month!

At Giving Strength Inc., we’re using this month to shine a light on SELENON-related myopathy (SELENON-RM) — an ultra-rare inherited muscle disease that deserves greater awareness.

🧬 What is SELENON?
SELENON is a gene that provides instructions for making a protein called selenoprotein N, which plays an important role in healthy muscle function. Changes in both copies of the SELENON gene can cause progressive muscle weakness, often affecting the muscles of the trunk and spine. Respiratory muscle weakness can also be a significant part of the condition.
For families affected by SELENON-related myopathy, being ultra-rare can mean facing limited awareness, resources, and understanding.
This September, Giving Strength Inc. stands with the rare muscle disease community to say:

💚 Rare doesn’t mean invisible.
💪 Rare doesn’t mean alone.
🧬 Every rare disease deserves awareness, research, and hope.

Help us spread the word and Give Strength to the rare disease community.

09/06/2026

🏃‍♀️💪 ONE WEEK TO GO! 💪🏃‍♂️
We’re officially ONE WEEK OUT from the Strides For Strength 5K & Fun Run! 🎉

Haven’t registered yet? Now’s the time! Whether you’re ready to chase a PR, walk with friends, bring the kids, or simply show up and support an incredible cause, there’s a place for YOU at the starting line. ❤️

🔥 Last-minute registrations are happening NOW!
👟 5K for the runners & walkers
🎈 Fun Run for the little ones
🙌 A great day for the whole community

Don’t sit this one out — lace up, show up, and Stride For Strength with us!

📅 ONE WEEK FROM TODAY
🎟️ Register now and join us at the starting line!
🔗 https://runsignup.com/Race/MD/OwingsMills/StridesforStrength

Tag your running buddy and let’s make this our biggest Strides For Strength yet! 💪❤️

RunForACause CommunityStrong LaceUp

09/04/2026

* Tear Alert *

Finn has always wanted to ride the Fairy Whip. Neck control made it impossible. His little brother wanted him to go with him so bad. Rowen held Finn’s head up the entire ride.

Rowen is my hero today. Best little brother that Finn could ever ask for.

To learn more about SELENON, visit givingstrengthinc.org

09/02/2026

🚨 ONLY 11 DAYS TO GO! 🚨
Sunday, September 13th is right around the corner, but there’s still time to REGISTER for the 3rd Annual Strides For Strength 5K & Fun Run! 🏃‍♀️🏃‍♂️

🔗 https://runsignup.com/Race/MD/OwingsMills/StridesforStrength

Every step makes a difference. ❤️ 100% of proceeds benefit Giving Strength’s mission to find a treatment for the rare muscular dystrophy SELENON.

Come WALK. RUN. MOVE. with us for a morning full of fun and purpose! 🎈🎨

✨ Balloon animals
✨ Face painting
✨ Airbrush tattoos
✨ And, most importantly, MOVING FOR SELENON!

📅 Sunday, September 13th
⏰ 9:30 AM
📍 McDonogh School | Owings Mills, MD

⏳ Don’t wait—11 days will fly by! Register today, grab your family and friends, and help us take STRIDES toward a treatment for SELENON.

We can’t wait to see you there!

Ken Racine The Unofficial Guide to DC | Maryland | Virginia (DMV) WBAL-TV 11 Baltimore, Maryland News Baltimore Moms Social Baltimore Sun

08/05/2026

A heartfelt thank you to everyone who took the time to join our Project Review meeting on June 29th! We were delighted by the turnout and inspired by the passion and commitment of this community to advancing drug development for SELENON-RM.

🔗 to the slides: https://givingstrengthinc-my.sharepoint.com/:b:/g/personal/karen_lavery_givingstrengthinc_org/IQAQyF73mJqdRak6AsCtQkrDAcxJb0n7xYcM-UgYi5Qc3gw?e=NKP864

Several people also asked about research projects that we hope to fund but that are currently awaiting financial support. We are grateful for your interest! There are always more worthwhile projects than our current budget allows us to support. We are actively working with new and existing collaborators to refine study designs, budgets, and agreements, and we will share details about these opportunities once everything is finalized.

There are of course many ways to contribute beyond financial support. Whether you are interested in volunteering, sharing your expertise, participating in research, or helping us raise awareness, we would love to hear from you.

Together, we can continue building the momentum needed to move SELENON-RM research forward!

08/04/2026

🚨 Time is running out! 🚨
Who’s ready to walk, run, and make a difference? 💙🏃‍♀️🏃‍♂️

Join us for the 3rd Annual Strides for Strength 5K & Fun Run and help bring hope to families affected by the rare muscular dystrophy SELENON.

🎽 Register by August 17 to GUARANTEE your race-day t-shirt—don’t miss out!

Your registration includes:
🏅 Race-day shirt
🥇 Medals for all 5K runners
🎨 Face painting
🎈 Balloon animals
✨ And so much more!

Every step you take and every dollar raised helps fund critical research to find a treatment for SELENON. Together, we can make a real impact.

📅 Sunday, September 13
📍 McDonogh School, Owings Mill, MD
⏰ Race starts at 9:30 AM

🎟️ Register now: www.givingstrengthinc.org/strides

Don’t wait—sign up today, invite your friends and family, and be part of something bigger than a race. Let’s fill the course with hope and strength!

07/13/2026

Join us this Friday, July 17 at 5 PM EST to talk with Citizen Health about how this AI tool can help ease your healthcare journey. Information at your fingertips!

🔗 to join Zoom meeting: https://zoom.us/j/96509452773?pwd=lAfUpPe6hJpW8braTYx2bwfdBWuUA2.1&from=addon

We will do our best to record and post the session!

Come ask questions and see how this tool can help you!