Great news from the Jada Foundation

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:

“𝗙𝗶𝗻𝗮𝗹𝗹𝘆, 𝘄𝗲 𝗰𝗮𝗻 𝘀𝗵𝗮𝗿𝗲 𝗼𝘂𝗿 𝗶𝗻𝗰𝗿𝗲𝗱𝗶𝗯𝗹𝗲 𝗻𝗲𝘄𝘀—𝗻𝗲𝘄𝘀 𝗼𝗳 𝗷𝗼𝘆, 𝗵𝗼𝗽𝗲, 𝗮𝗻𝗱 𝗮 𝗳𝘂𝘁𝘂𝗿𝗲 𝗳𝗶𝗹𝗹𝗲𝗱 𝘄𝗶𝘁𝗵 𝗽𝗼𝘀𝘀𝗶𝗯𝗶𝗹𝗶𝘁𝗶𝗲𝘀!

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 again—this time, for the better!

With all the hope in my heart, I am beyond grateful to announce that 𝗝𝗮𝗱𝗮 𝗵𝗮𝘀 𝗯𝗲𝗲𝗻 𝗮𝗰𝗰𝗲𝗽𝘁𝗲𝗱 𝗶𝗻𝘁𝗼 𝗮 𝗰𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝘁𝗿𝗶𝗮𝗹 𝗳𝗼𝗿 𝗮 𝗴𝗿𝗼𝘂𝗻𝗱𝗯𝗿𝗲𝗮𝗸𝗶𝗻𝗴 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁 𝘁𝗵𝗮𝘁 𝗵𝗮𝘀 𝗮𝗹𝗿𝗲𝗮𝗱𝘆 𝘀𝗵𝗼𝘄𝗻 𝗶𝗻𝗰𝗿𝗲𝗱𝗶𝗯𝗹𝗲 𝗿𝗲𝘀𝘂𝗹𝘁𝘀 𝗳𝗼𝗿 𝗩𝗮𝗻𝗶𝘀𝗵𝗶𝗻𝗴 𝗪𝗵𝗶𝘁𝗲 𝗠𝗮𝘁𝘁𝗲𝗿 𝗗𝗶𝘀𝗲𝗮𝘀𝗲!

I still have to pinch myself—it doesn’t feel real that a treatment exists, let alone that my sweet girl will be receiving it.

I’ll be sharing more details soon about the trial and the support we’ll 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 𝗠𝗮𝗿𝗰𝗵 𝟭𝟮 𝗼𝗿 𝗠𝗮𝗿𝗰𝗵 𝟭𝟵, 𝘄𝗲 𝘄𝗶𝗹𝗹 𝗯𝗲 𝗯𝗼𝗮𝗿𝗱𝗶𝗻𝗴 𝗮 𝗽𝗹𝗮𝗻𝗲 𝘁𝗼 𝗰𝗵𝗮𝗻𝗴𝗲 𝗝𝗮𝗱𝗮’𝘀 𝗹𝗶𝗳𝗲.

We are giving her the chance at the life she deserves. My heart is still in shock—it doesn’t feel real yet. But maybe, once a few more pieces fall into place, I won’t 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.”

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 Jada’s journey, visit https://www.facebook.com/JadaAnnFoundation?mibextid=wwXIfr&mibextid=wwXIfr

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