HOPE FOR A Cure is Here
Children with SPG50 need your help to get treatment
what is spg50?
Spastic Paraplegia 50, or SPG50, is an ultra-rare neurodegenerative disease that affects children. The disease causes spasticity that starts in childREN’s legs, slowly taking away their ability to walk. The spasticity then takes away their ability to use their hands, and ultimately, their mental capacity.
we believe that A cure exists.
The gene therapy, “Melpida”, has been developed to treat SPG50 and has just received FDA approval for a clinical trial. Public funding is the only thing standing in the way of more children receiving the therapy. We need your financial help so that the treatment can be manufactured and administered as soon as possible.
Our Mission
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Fund Treatment
The gene therapy “Melpida” is a potentially life-altering treatment and we believe that every child with SPG50 should have the opportunity to receive it. Naomi’s Corner raises funds to manufacture and administer the therapy.
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Support Research
Naomi’s Corner will support ongoing research on the existing gene therapy and continue to investigate other therapies and potential cures.
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Raise Awareness
With less than 100 children in the world currently diagnosed with SPG50, there isn’t enough awareness of this horrible disease. Naomi’s Corner will raise awareness so that every child affected by SPG50 has access to treatment.
No parent or child affected by this disease SHOULD ever feel hopeless again.
Naomi’s Corner is a member of the Jack’s Corner Foundation Network, a network of nonprofit organizations dedicated to improving quality of life and finding a cure for children with SPG50 through the funding of research and acceleration of gene therapy treatments.
meet Naomi!
A few of naomi’s favorite things:
Chicken Nuggets
The Itsy Bitsy Spider
Cuddles & Kisses
Swinging
Peek-a-boo