Johannesburg, 14th February 2025 - Rare Diseases South Africa is thrilled to share the news coming out the Jada Foundation this week.
Jada, after 13 years, has finally been accepted into a clinical trial for the treatment of Vanishing White Matter Diseases (VWMD), bringing hope to not only VWMD community, but also, to all of the rare disease patients in South Africa, searching for possible treatment opportunities.
The Jada Foundation reports:
โ๐๐ถ๐ป๐ฎ๐น๐น๐, ๐๐ฒ ๐ฐ๐ฎ๐ป ๐๐ต๐ฎ๐ฟ๐ฒ ๐ผ๐๐ฟ ๐ถ๐ป๐ฐ๐ฟ๐ฒ๐ฑ๐ถ๐ฏ๐น๐ฒ ๐ป๐ฒ๐๐โ๐ป๐ฒ๐๐ ๐ผ๐ณ ๐ท๐ผ๐, ๐ต๐ผ๐ฝ๐ฒ, ๐ฎ๐ป๐ฑ ๐ฎ ๐ณ๐๐๐๐ฟ๐ฒ ๐ณ๐ถ๐น๐น๐ฒ๐ฑ ๐๐ถ๐๐ต ๐ฝ๐ผ๐๐๐ถ๐ฏ๐ถ๐น๐ถ๐๐ถ๐ฒ๐!
Almost 13 years ago, our world changed forever when we first heard the words Vanishing White Matter Disease. It was a diagnosis that filled our hearts with uncertainty and fear.
But today, I get to share news that changes our lives once againโthis time, for the better!
With all the hope in my heart, I am beyond grateful to announce that ๐๐ฎ๐ฑ๐ฎ ๐ต๐ฎ๐ ๐ฏ๐ฒ๐ฒ๐ป ๐ฎ๐ฐ๐ฐ๐ฒ๐ฝ๐๐ฒ๐ฑ ๐ถ๐ป๐๐ผ ๐ฎ ๐ฐ๐น๐ถ๐ป๐ถ๐ฐ๐ฎ๐น ๐๐ฟ๐ถ๐ฎ๐น ๐ณ๐ผ๐ฟ ๐ฎ ๐ด๐ฟ๐ผ๐๐ป๐ฑ๐ฏ๐ฟ๐ฒ๐ฎ๐ธ๐ถ๐ป๐ด ๐๐ฟ๐ฒ๐ฎ๐๐บ๐ฒ๐ป๐ ๐๐ต๐ฎ๐ ๐ต๐ฎ๐ ๐ฎ๐น๐ฟ๐ฒ๐ฎ๐ฑ๐ ๐๐ต๐ผ๐๐ป ๐ถ๐ป๐ฐ๐ฟ๐ฒ๐ฑ๐ถ๐ฏ๐น๐ฒ ๐ฟ๐ฒ๐๐๐น๐๐ ๐ณ๐ผ๐ฟ ๐ฉ๐ฎ๐ป๐ถ๐๐ต๐ถ๐ป๐ด ๐ช๐ต๐ถ๐๐ฒ ๐ ๐ฎ๐๐๐ฒ๐ฟ ๐๐ถ๐๐ฒ๐ฎ๐๐ฒ!
I still have to pinch myselfโit doesnโt feel real that a treatment exists, let alone that my sweet girl will be receiving it.
Iโll be sharing more details soon about the trial and the support weโll need from our family, friends, and community to make this journey possible for Jada. But for now, I just needed to share this moment with you all.
On either ๐ ๐ฎ๐ฟ๐ฐ๐ต ๐ญ๐ฎ ๐ผ๐ฟ ๐ ๐ฎ๐ฟ๐ฐ๐ต ๐ญ๐ต, ๐๐ฒ ๐๐ถ๐น๐น ๐ฏ๐ฒ ๐ฏ๐ผ๐ฎ๐ฟ๐ฑ๐ถ๐ป๐ด ๐ฎ ๐ฝ๐น๐ฎ๐ป๐ฒ ๐๐ผ ๐ฐ๐ต๐ฎ๐ป๐ด๐ฒ ๐๐ฎ๐ฑ๐ฎโ๐ ๐น๐ถ๐ณ๐ฒ.
We are giving her the chance at the life she deserves. My heart is still in shockโit doesnโt feel real yet. But maybe, once a few more pieces fall into place, I wonโt need to pinch myself anymore. Because we will be on that plane, getting my baby the treatment she needs to live the beautiful life I have always promised her.โ
RDSA wishes Jada, Kim and Bruce all the best as they head off to the USA. We remain hopeful that this will be the answer to many prayers.
To follow Jadaโs journey, visit https://www.facebook.com/JadaAnnFoundation?mibextid=wwXIfr&mibextid=wwXIfr
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