09/06/2022
We are helping one of the rare disease families we are working with for their fundraising.
Their youngest son Tristan was diagnosed with KCNH1 genetic disorder, a rare neurological condition that causes seizures, profound intellectual disability, severe movement and speech disorders, and various medical complications. The parents founded a patient advocacy Cure KCNH1 Foundation, Treatments4Tristan with the mission to seek the cure for KCNH1 kids like Tristan.
They have been working with Perlara and iXCells Biotechnologies to screen A*Os as the potential drug candidates. We have identified several good hits, and now the foundation will need more funds to support their journey in seeking the cure for Tristan.
If you are willing to show your support, there are several ways you can help here.
1. Add "Cure KCNH1 Foundation" as your charity in your Amazon Smile account. Amazon will donate .5% of all approved
purchases to the foundation. All you have to to is to place your future amazon order via your Amazon Smile link. Here is the instruction.
https://lnkd.in/gPVnxZyM...
3. Follow them on the social media and share with your connections.
Twitter (https://lnkd.in/gZwtNDq5)
Instagram (https://lnkd.in/gcPY-qDp)
Thank you all for your support. Together we can turn the impossible into miracles.
https://www.curekcnh1.org/
My husband and I were thrilled to welcome our fourth and final boy to the world on November 26th, 2019. After a scary delivery, everything seemed to be stable, but once all the doctors and nurses had left the room I asked my husband if he thought Tristan was okay because something about his eyes d...