February is Rare Disease Awareness Month.

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Greg enjoys sharing his story with medical professionals.

Many thanks to Professor Ben Canha in allowing Greg to teach his nursing students about MLD and Leukodystrophy! Greg really enjoys sharing his story with medical professionals with the hopes that they help him spread awareness too. Blessed that many of them took his challenge and wanted his “muddy bracelets” – a conversation starter for sharing with more people!

Greg is working hard to rebuild his core strength and leg muscles

Greg has been working! The Baclofen pump has been great to reduce the clonus but has also taken away his muscle tone and strength. Trying hard to rebuild his core strength and leg muscles. MLD affects the transmission of information to all the muscles and his hips and leg muscles are shortening and very weak. He finally received his new walker which really helps him with stability and allows him to walk faster. Praying it helps him to build up his muscles!

Greg has a chance to use the “walking robot!”

Download and watch the video.

Greg had a chance to use the “walking robot” today!! We are so blessed to have Kennedy Krieger “close” by!! The Baclofen pump isn’t doing as much as we thought it would – he’s had to work hard to build his muscle strength to make up for the tightness that the Baclofen takes away. Hoping the robot will help Greg increase his stride and improve his gait.

Continue the prayers please!

Happy 23rd Birthday Greg!

Greg celebrated his 23 Birthday yesterday! Thank God for giving us another year! Greg always says he’s an “anomaly” – and for that we are grateful and blessed! He recently told some nurses, “I outlived my expiration date and I’m not even moldy!” Love his spirit and courage!
Continuing to raise awareness for MLD!

Greg talks about his MLD journey with medical students

A conference room full of medical students came together to hear about Greg’s journey with MLD today!

Their eagerness to learn and hear what he had to say was so heartwarming.

We are hopeful that these future doctors will help us further awareness and knowledge about Leukodystrophies. Greg continues to be the voice for those not as fortunate as he has been.

Always grateful for opportunities to educate the medical community – perhaps one of these bright students will someday be responsible for a cure.

Looking forward to the possibility of ongoing speaking engagements with Johns Hopkins University Medical School.

A special thanks to The SIG members and their mentors for facilitating this experience!

Please continue to pray for our Leukodystrophy Family!


Talking MLD during “Nurse’s week!”

What better way to start “Nurse’s week” than educating a group of future nurses about MLD!

It’s hard to believe that this is the 6th time that Greg has been able to share his story and his journey. He knows how fortunate he is to have a voice to continue to raise awareness for Leukodystrophy!

The University of Maryland at Shady Grove Nursing students were engaged and welcoming. We have faith that they or one of their colleagues will be the catalyst in helping to find a cure for these diseases!

A heartfelt thanks to their interest and attention. The dialog after his speech meant so much. We wish them success and purpose in their future nursing careers!

We will #Nevernevergiveup

Surgery gives Greg hope and pushes him forward!

March was a busy month for Greg. He has been having more difficulties with walking which is heightened when he’s tired.
He has had two surgeries – the first being a test trial to see if his body would react well to intrathecal (in the spine) Baclofen. Fortunately, it did! So the second surgery was to implant a Baclofen pump in his abdomen that is connected to a catheter in his spine to administer medicine directly into his nervous system.
He is now home recovering but has to return to Kennedy Krieger several days a week for a few weeks to adjust his dose and for physical therapy sessions to help retrain his walking.
We are seeing some improvements, albeit slow. The trial “reaction” is what is giving us hope and pushing him forward!
We ask our prayer warriors to continue praying for Greg – specifically for healing from surgery and for his body to respond well to the pump medication!

On a side note, Greg taught a lot of nurses and students about MLD during his six day stay at Hopkins! Raising awareness and hoping for a cure! Hoping to give more speeches at new venues in the near future!

Special shout out to our PT’s Christie and Rachel. Our Nurses: Keisha, Nelson, Ashley, Valerie, Danielle, Shannon, Kathy, and Hohyung! And our students: Taylor, Alisa and Richard (looking forward to educating some nursing professors!)

Greg talks MLD with nursing students at The University of Maryland School at Shady Grove campus

Greg had the opportunity to share his story about MLD with nursing students at The University of Maryland School at Shady Grove campus today. Thank you Ben Canha for allowing us the opportunity to educate your students about MLD

We were touched by the inquisitive nature and heartfelt wishes we were blessed with today.

Our world is bright with these future nurses at the helm. We continue to have faith that they or one of their colleagues will be the catalyst in helping us to find a cure for MLD!

We will #nevernevergiveup