Cycling To Cure Duchenne Muscular Dystrophy

06/29/2025

I crossed the finish line. 500 miles of cycling in June. Huge shoutout to all of those that joined me in helping raise money and awareness for Jett Foundation

06/29/2025

For those that joined in the June Activity Challenge, I created a certificate you can download and fill out. Please comment with a picture after you complete your challenge.

06/28/2025

I just hit 470 miles on my Peloton for the month of June. If you have not been keeping track, I'm riding 500 miles this month to raise money for Jett Foundation and families impacted by Duchenne Muscular Dystrophy. I'll cross the finish line tomorrow. If you have a Peloton bike and you would like to join me, hop on Jenn Sherman - Peloton's live ride at 10am EDT. My leaderboard name is JediRiderJoe. I'll be riding under the tag .

There's still time to donate to the cause. Please check out my fundraiser page at

06/09/2025

180 out of 500 miles done for Jett Foundation and families impacted by Duchenne. Thank you to Harrison's family for sharing a day in their lives. People don't realize how costly it can be for a family. Extra care. Extra equipment. Having to taking time off of work. The emergency fund from Jett Foundation provides assistance for families struggling to cover their bills. At some point my girls will have to face these challenges. Please consider helping out with a donation. Any amount will help. Link to my fundraising page is in the comments. Thank you for supporting the Duchenne Muscular Dystrophy community.

We have transitioned to a hospital home now. Is it temporary. I don’t know.

We have carers in the house every night now while we try and get some sleep and to assist through the day. They tread lightly around our house as we sleep caring for our boy and some kindly helping with chores.

Sleep at the moment for Harrison now comes in short clusters. He is managing 4 to 5 hours sleep each time. All his therapy is in the home now and hydrotherapy when we can. We have reduced his time at school.

Routine is absolutely out the window. Showers happen when we can. Quick, cheap easy meals for dinner. A baby monitor next to our beds if no one comes so we can hear him if she calls out after he’s fallen asleep and get up every two hours when he is asleep to alleviate any chance of pressure sores. We hold down jobs and participate in mainstream life as best we can even when one day can blur into another and we feel anything but mainstream.

The next 48 hours are always a mystery now as it’s hard to tell how things will unfold. Will he sleep well enough to go to school tomorrow? Will a support worker come to help me get Harrison into his chair? Will I be able to work? The cost of living is crippling us as rent and food increases.

We are on autopilot now. Not whinging. Just highlighting the fact that for some this is how life is for us and for some other people with a disability. I didn’t think we’d be like this with Harrison being only 12 years old though.

Duchenne Muscular Dystrophy freaking sucks.

05/06/2025

Please join me in Jett Foundation's national challenge to support families impacted by Duchenne Muscular Dystrophy. I'm hosting a month-long event in June where you can set an activity goal. Bike, run, walk, crawl, golf...whatever you want to do. Just keep moving for Duchenne. Use the link below to sign up for the challenge and make a donation. Make sure you enter your goal in the comments of the sign-up form. I will have a certificate of achievement available, soon. Once you accomplish your goal, please post a picture with your certificate. Thank you for your support.

12/03/2024

Happy Giving Tuesday! Today (and every day) is a chance to show your generosity. 'Tis the season. Please join the global movement by donating to a great charity that supports families affected by Duchenne Muscular Dystrophy, Jett Foundation. Any amount is appreciated. Thank you!

Please support my important cause!

09/07/2024

Today is World Duchenne Muscular Dystrophy Awareness Day. DMD was thrown into my life 5 years ago when I found out my older grandson had it. 2 years later, my younger grandson was diagnosed with it. DMD is a rare genetic disorder where the body is not capable of producing the protein needed to sustain muscular development. Muscle function, including the heart and diaphragm, gradually deteriorate. I'm sure you remember Jerry Lewis and his Telethon. That was all for people with Muscular Dystrophy. If you pray, please take a moment to pray for a cure.

08/17/2024

The countdown is on. My sister Rose Hess-Nunn needs a few more Pampered Chef purchases to reach her fundraising goal for Jett Foundation. Please check them out and treat yourself to something reeeal niiice.

08/15/2024

My sister is hosting a fundraiser. Portions of the sales will be donated to Jett Foundation. Please take a look at some of the cool Pampered Chef products. If something catches your eye, buy it. You'll be helping yourself and many families affected by Duchenne Muscular Dystrophy.

07/18/2024

Very early, but the preclinical results are encouraging.

Satellos Bioscience asked Australian authorities for permission to launch a Phase 1 trial of its DMD treatment candidate SAT-3247.

03/19/2024

More positive news. Givinostat is showing positive results with muscle repair, reduced inflammation and reduced fibrosis. Hopefully, we will know shortly if the FDA approves it as another treatment option for Duchenne. Thank you Parent Project Muscular Dystrophy for keeping us updated.

Italfarmaco S.p.A. has announced that the full results from the pivotal phase 3 EPIDYS clinical trial of givinostat in ambulant Duchenne patients six years of age and older have been published in The Lancet Neurology....

03/05/2024

More progress. RGX-202 demonstrated a significant increase in Dystrophin and a decrease in CK levels after 12 weeks. Dystrophin is a protein that helps strengthen and repair skeletal and heart muscle fibers. It is the protein that is missing in Duchenne Muscular Dystrophy. The serum creatinine kinase (CK) levels will be high when there is muscle damage. A lower value means less damage. Keep those prayers coming.

REGENXBIO Inc. has shared an update on the Phase I/II AFFINITY DUCHENNE® trial of RGX-202 in patients with Duchenne ages 4 to 11 years old, including RGX-202 microdystrophin expression from dose level 2. RGX-202 is...