Isabella is a kind and very happy 12 year-old girl. She was diagnosed with Vanishing White Matter disease (VWM) in November 2009 at the age of 4. Isabella has a younger sister who is fortunately not affected by VWM.
Isabella is unusual for a VWM patient in that 8 years after diagnosis, she is still able to walk. Though she wears orthotics and for long distances uses a wheelchair. VWM is a genetic disease. The severity and speed of progression of VWM differs for each patient based on their individual mutations.
Isabella’s Favorite TV Show: Jessie
Isabella’s Favorite Food: Shrimp & Popcorn chicken w/ BBQ sauce
Isabella’s Favorite Things: Playing Minecraft!
To read more about Isabella see: https://medium.com/leukodystro phy-awareness/cure-for-isabell a-d84ef3207f8e#.9f4qgju43 or https://vwmff.org/vwm-patient-stories/
Vanishing White Matter disease (VWM) is a very rare neurological condition that destroys myelin, the brain’s white matter. In doing so, it permanently affects transmission of brain signals to the rest of the body. VWM primarily affects children and is untreatable, incurable and terminal. Most patients live between 5–10 years following diagnosis.
Thank you so much for your participation in the Rare Disease Day 5K for VWM. It will allow us to fund research into VWM and support families like Isabella’s who are living with VWM every day.
T-shirts for the event are available for purchase until February 5th here: https://www.customink.com/fundraising/rare-disease-day-5k-for-vwm-2018?side=back&type=1&zoom=true
If you would like to create a personal fundraising page for the run, please join our team here: https://www.crowdrise.com/o/en/campaign/2018-rare-disease-day-virtual-5k-for-vwm
We are so grateful for your support.
VWM Families Foundation, Inc.
Registered 501(c)(3) charity organization EIN: 81–2058803
VWM Families Foundation wrote -
Join us on Rare Disease Day, February 28th, 2018, for a virtual 5K to support the VWM Families Foundation. Register to walk or run, indoor or outdoor, from wherever you are on February 28th!
All proceeds support the VWM Families Foundation. Vanishing White Matter disease (VWM) is a very rare neurological condition that destroys myelin, the brain’s white matter. In doing so, it permanently affects transmission of brain signals to the rest of the body. VWM primarily affects children and is untreatable, incurable and terminal.
In 2016, the VWM Families Foundation was formed to raise awareness of VWM, to raise money for research and to support families living with VWM within the United States and worldwide.