Help cure XLID98

https://www.xlid98.org/

XLID98 (KIAA2022, NEXMIF, MRX98) is a rare genetic condition that has currently, been identified in approximately 200 people worldwide. New cases are being identified every day through advances in whole genome and/or exome genetic sequencing.

This condition presents with a wide array (or spectrum) of symptoms and levels of abilities, and affects every single person differently. Some of the main symptoms (not everyone has these) are:

● epilepsy, having hundreds of seizures a day

● severe developmental/intellectual delays

● non-verbal

● incontinence

● slow motility - both gastric and esophageal

● swallowing difficulties, sometimes leading to g-tubes

● autistic tendencies

● while others with this condition can talk, read, and function at their appropriate age level

We are excited to be raising funds to help make life better for those affected by this condition. We are in the beginning stages of starting a foundation to raise funds to support medical research on this condition. We need your financial support to help make the foundation a reality, and fund the necessary research for a cure. We already have a geneticist on board who has begun research, and we have the mouse model developed for XLID98. Our board is formed. The paperwork is in the works to get charitable status. But, as many of you know, it takes funds to get this off the ground. Help us make our dreams a reality by donating to this cause, and bring some hope to the families of those affected by this rare and debilitating condition.