Hello my name is Lorena. I have really enjoyed being a peer tutor in Marshall Middle School for the past two years there. I’m also a girl scout in my ninth year. As a part of Girl Scouts and one of my class assignments for peer tutoring, we are challenged with raising awareness in our community about something we are passionate for. Recently, I found out one of my sister's friends, Gavin, has an ultra rare genetic disorder. It's called CMT4J and only 25 people in the whole world have been diagnosed with the condition. CMT4J causes the nerves in a person's body to start disintegrating, which causes a person to slowly lose control of their muscle function. People with the condition can experience complications even from common cold because their immune system has been weakened so much. Many people with CMT4J don't get to the full potential of life and it is very important to try and find a cure so that people with CMT4J can live as long as the rest of us. It is also very similar to ALS (it has some of the same effects on the body including loss of muscle function). The good news is that there is an organization called Cure CMT4J that is trying to raise $1,000,000 every year for experimental gene therapy to find a cure. The goal of this GoFundMe page is to support Gavin and his family with medical and any other related expenses to support them through this journey and awareness about this genetic condition. I am very thankful my community is so generous and understanding. Thank you for helping me pursue my passions, (Girl Scouts) Silver Award, and raise awareness for this ultra rare genetic disorder.
If you would like to learn more about CMT4J the website is: http://www.curecmt4j.org<http: //www.curecmt4j.org/>