This Is A Custom Widget

This Sliding Bar can be switched on or off in theme options, and can take any widget you throw at it or even fill it with your custom HTML Code. Its perfect for grabbing the attention of your viewers. Choose between 1, 2, 3 or 4 columns, set the background color, widget divider color, activate transparency, a top border or fully disable it on desktop and mobile.

This Is A Custom Widget

This Sliding Bar can be switched on or off in theme options, and can take any widget you throw at it or even fill it with your custom HTML Code. Its perfect for grabbing the attention of your viewers. Choose between 1, 2, 3 or 4 columns, set the background color, widget divider color, activate transparency, a top border or fully disable it on desktop and mobile.

Member & Family Blog

/Member & Family Blog

My Sister Jessica

Written and presented by Christina Gentle at the 2018 RARE Gala GalaSpeech Hi everyone, thanks for being here tonight. I’m Christina, Jessica Gentle’s sister. If you were at the Gala last year you might remember the great speech she gave about what it’s like to live with MPS 1, which is also known as Hurler Syndrome. [...]

Sanfilippo and How it Affects My Family

Written by Hannah Gilhuis in the spring of 2014. Imagine if you couldn’t express yourself in the way others around you could. That is what it is like for my siblings Rachel and Mathew, who are living with Sanfilippo Syndrome. How this disease works?  Well we all have enzymes in our bodies.  Some are supposed to [...]

Living life successfully with Morquio A

Hello Everyone,   My name is Natasha Kaweski and I have MPS IVA (Morquio A).  I was diagnosed with Morquio syndrome when I was one and my brother, Damien, was three.  My parents noticed that Damien was not growing as most toddlers do, and so they took him to the doctors who then suggested that I [...]

View Jessica Gentle’s Presentation

In May of 2017, Jessica Gentle spoke at our annual Ignite Hope Fundraising Gala and wowed everyone with her delightful presentation! PowerPoint - Jessica