Community Highlights: Meet Rebekah Lockard of Naomi’s Corner

Today we’d like to introduce you to Rebekah Lockard

Hi Rebekah, can you start by introducing yourself? We’d love to learn more about how you got to where you are today?
Naomi’s Corner was born out of a desire to save my oldest child’s quality of life. Naomi was diagnosed with an ultra-rare genetic condition called SPG50 in May 2023. There are less than 100 people in the world affected by this disease, which causes a global developmental delay and degeneration. Affected kids are projected to become paraplegic in elementary school, quadriplegic in high school, and the life expectancy is shortened dramatically, to roughly 20-30 years old. The condition causes children to be nonverbal and have a moderate-to-severe cognitive delay. Many children are never able to walk and those that do lose the ability eventually.

The condition is hereditary – Naomi inherited a corrupted copy of the AP4M1 gene from both my husband and myself. There was a 25% chance she would inherit two mutated copies of the gene. When we learned of Naomi’s diagnosis we also learned that any future children of ours would also have a 25% chance of being diagnosed with SPG50. This was devastating as we were expecting our second child in just four weeks. Jack was born in June 2023 and was diagnosed with SPG50 shortly after.

The only hope to give our children a solid quality of life is gene therapy. A fellow parents developed a drug to treat SPG50 by introducing a healthy copy of the AP4M1 gene into the body. Three kids have been treated in a FDA clinical trial, including Jack! The kids who have been treated are doing amazing. Their disease progression has slowed considerably and even stopped.

FDA clinical trials are very expensive and big pharmaceutical companies don’t test drugs that only treat a small portion of the population. The drug company that is running the SPG50 clinical trial is tiny – just a fellow parent and a few experts who are working tirelessly to make sure kids with SPG50 get the treatment they deserve.

Naomi’s Corner serves to raise money to make sure the FDA clinical trial can continue treating kids with SPG50. We hope she will be selected one day to receive treatment. Our hope and dream is that every child with SPG50 can receive the life-changing, and potentially life-saving, treatment they need and deserve.

Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
There are a lot of challenges in trying to raise money for a clinical trial that treats an ultra-rare condition. There have been many setbacks that are out of our control, which is anxiety-inducing. We work full time jobs and run the nonprofit on the side, which is exhausting. Because our kids are disabled we do hours of therapies a week for them and have little downtime.

The biggest hurdle has been getting the word out and raising awareness. We are trying to raise $1.5 million dollars, which is a huge sum. It takes a lot of work to raise seven figures!

We’ve been impressed with Naomi’s Corner, but for folks who might not be as familiar, what can you share with them about what you do and what sets you apart from others?
Naomi’s Corner is raising money to treat kids with SPG50. Our hope is to raise enough money to make sure the FDA clinical trial can continue. We are proud of what we have been able to accomplish in a short amount of time.

What matters most to you?
Access to healthcare matters most to us. SPG50 is treatable, but insurance doesn’t pay for the treatment. The drug is sitting in a fridge ready to be given to kids – but there isn’t enough money to do that yet. SPG50 affects less than 100 people in the world, but one in ten people have some form of rare disease. We wish healthcare was in a place where everyone could get the medical help they need without having to raise millions of dollars.

Contact Info:

• Website: https://www.naomiscorner.org
• Instagram: https://www.instagram.com/naomiscornerfoundation/
• Facebook: https://www.facebook.com/profile.php?id=61563525751662

Image Credits
Lindsey Jane Photography