Giving Strength Inc

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!

07/09/2026

The 3nd Annual Strides for Strength 5K and Fun Run will be held at McDonogh School with all proceeds benefiting Giving Strength Inc and our mission to fund research grants and build awareness for the rare congenital muscular dystrophy, SELENON Related Myopathy.

Run or walk with us on Sunday, September 13th at 9:30 AM for a great cause!

Fun run for all, 5k, activities for the kids, and a great way to move for SELENON!

🔗 https://www.givingstrengthinc.org/strides

Register today! Share and bring a friend.

Hope to see on September 13th.

Ken Racine

Every dollar raised and donation made will make a major impact on future research for congenital muscular dystrophy subtype, SELENON.

07/07/2026

Giving Strength partnered with Citizen Health to help the SELENON community. Got questions on how this tool can help you? Join our webinar on Friday, July 17 at 5pm ET to ask all your questions!

Navigate your or your child’s complex medical history with more confidence. Citizen Health’s AI Advocate instantly answers questions about medical records, helping you understand patterns, track progress, and prepare for appointments. Finally, you can make sense of years of medical complexity with a tool that could remember every detail of your journey.

Save the date! Dial in information coming soon so be on the lookout. Message us if you have questions.

06/12/2026

Excited to announce Strides for Strength 5k & Fun Run will be on Sunday, September 13th!

Hope you will join us for a morning of walking or running for a great cause. All proceeds from this event supports Giving Strength’s mission to find a treatment for the rare progressive disorder SELENON.

Looking for runners and partners! Sign up today to take advantage of early bird pricing. Prices increase on June 15th.

🔗 givingstrengthinc.org/strides

The Unofficial Guide to DC | Maryland | Virginia (DMV) Howard County Striders slow strides run club Annapolis Striders Baltimore County Striders SK Striders Run Club Howard County Striders Racing Team

06/01/2026

A heartfelt thank you to our 2026 Swings for Finn Golf Tournament sponsors. This event would not be possible without your incredible generosity, partnership, and support.

A very special thank you to our Presenting Sponsor, Scaffold Resource, for standing beside us for six consecutive years. Your unwavering commitment to Finn, our family, and the SELENON community means more than words can express. Thank you for being a loyal partner, advocate, and champion for this mission year after year.

We are looking forward to an unforgettable day on the course in support of an important cause. Every dollar raised on Monday, June 8th will help fund critical research for treatments for SELENON, a rare and progressive form of muscular dystrophy. Together, we are driving hope forward.

05/27/2026

SELENON Related Myopathy is treatable. With the support of our community, researchers, and doctors we can find a treatment that will make a difference in the lives of all navigating this genetic disorder.

Big Pharma won’t fund research which is where Giving Strength comes in. Thanks to your support, we have raised over $1.9 million dollars for research. Every dollar used to find that life changing treatment. We won’t stop. We can’t stop.

Thank you to the family, friends, companies, doctors, scientists, and the community that has railed around us, Finn and all those with SELENON. Thank you!

We look forward to the day we can say….. We did it!

05/21/2026

After waiting MONTHS for a sleep study, Finn finally had his appointment!

Sleep studies are crucial to ensuring his biPAP is working properly to push out CO2 while he sleeps. Due to weakness in his core, Finn is unable to do it on his own.

The study lasted all evening. Now we wait for the results!

Thank you for caring care of our Finn! And thank you for calling several times to keep moving up his date to wiggle Finn in sooner. We really appreciate it! The staff were absolutely wonderful!