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Barbara Melendi
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Barbara Melendi
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Barbara Melendi
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Barbara Melendi
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Barbara Melendi
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Barbara Melendi
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On February 12, Tilly turned 5 years old, just 4 short months after the 5th birthday of PURA Syndrome itself! To date, over 350 individuals worldwide are known to be affected by PURA Syndrome. Many more have yet to get their answers and join our global family. It's been rewarding to see Tilly's physical, emotional and cognitive progress, gained through her own perseverance, and helped by medical interventions and intensive therapy over the past 5 years. She brings joy to everyone who meets and works with her. But there is still much work to be done to give her the brightest possible future.
The PURA Syndrome Foundation has been fundamental in championing much-needed research aimed at understanding this rare disease and possible treatments. Cutting edge research with CRISPR-Cas9 genome editing technology, animal models (mice, frog and zebra fish), and metabolomics (I had to look that one up when I first heard of it) is currently underway. A global patient registry and biobank are in the final stages of implementation, and so much more. I'm proud to say that Tilly has contributed to multiple research initiatives over the past few years. After all, when you are 1 in 22 million, you get to be pretty popular with researchers!
Of most urgent interest to our family is the PURA Syndrome Global Epilepsy Research Project that aims to understand the underlying causes of PURA seizures and investigate possible treatments. Seizures afflict many in our community and can strike at any time. They often rob our children of their hard-won achievements. Tilly has had seizures on several occasions, so we are eager for researchers to understand and development treatments for these confounding and often drug-resistant "PURA seizures."
Our personal goal is to find 111 supporters willing to donate $5 to the PURA Syndrome Foundation in honor of Tilly's 5th Birthday and World Rare Disease Day coming up on February 29th, 2020. All donations will help fund much-needed research and provide continued support for families affected by this rare genetic condition.
Thank you for your interest and your continued support! Please share this campaign with your friends and family to spread the word.
#PURAPerfect #RareButMighty #ThankYou