I've recently been made aware of an event called "Pub Crawl Thru The Mall" coming up on January 26th, 2019 to benefit "Liv 4 the Cure," a local charity. I thought this sounded like a great event to benefit a disorder I hadn't really heard of before.

Lucky Strike, World of Beer, Funny Bone and UNOs have announced their participation. More locations may join in the fun. The crawl will start at 2pm and will move from one location to the next every 1-1.5 hrs.

Liv4TheCure’s mission is to fund research for children with rare chromosomal deletion syndromes. The name Liv4TheCure comes from “Liv”, our daughter who has a rare disease, “4” which is the chromosome that is affected and the “Cure” in which we will find.  Thirty million Americans are affected by rare diseases and two-thirds of those are children.  People who suffer from rare diseases have devastating medical issues and limited or no treatment options.

Olivia has a chromosomal deletion syndrome called Wolf Hirschhorn Syndrome which is a deletion on her 4th chromosome.  In other words, part of the genetic material that is supposed to be there is missing which causes an array of medical issues.  Children with WHS suffer from seizures, cleft palates, clubfoot, heart anomalies and developmental delays, only to name a few of the effects.  Developmental delays affect children on a wide spectrum, from children learning to walk and talk at later ages like 4 or 6 years old to possibly never walking and talking.

Currently, there are no treatments for this genetic syndrome.  There are ways to treat seizures such as medicines for seizure control, but most are still not controlled.  At this point, all treatment is treatment of the effects, not treatment of the actual cause.

Technology is on the cusp of being able to cure genetic diseases.  Some genetic syndromes are being cured by treatments where AAV vectors or viruses are delivering the genetic material back to where it is missing throughout the body’s cells.  Clinical trials are underway for diseases where a small amount of cellular material is missing.  The issue with this for kids with large genetic deletions, such as WHS is that there is no platform technology that can deliver all the missing genetic material.  Currently, there is no cure.  Liv4TheCure wants to change this.  We want to fund research to create a new platform technology that can deliver ALL the missing material and literally CURE these children.  Our first goal is to raise enough money to bring together the leading scientists, researchers, and technologies to come up with the next steps to creating this new technology that can cure our children.  This meeting is scheduled for Fall of 2019.  We will then fund this research moving forward.

Liv4TheCure is a 501c3 nonprofit.

EIN: 82-2006780

Learn more at: www.liv4thecure.org

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