Joshua's medical-gene transfer fund
Donation protected
Hi, my name is Joshua Thurmond and currently residing in Westland, Michigan. A little about myself is that I am currently in college taking classes at Henry Ford College seeking an Associates Degree in Information Assurance and Criminal Justice, having just finished up my Associates in Liberal Arts as I went back and forth about what I wanted to go into. Due to health and my passion for computers this would be the perfect career, combining criminal justice and computers in hopes to one day work in computer forensics.
When I was born, 27 years ago it looked like I had a third degree burn on my right foot and after extensive testing I was diagnosed with Epidermolysis Bullosa Recessive Dystrophic (RDEB) or E.B. for short. E.B. causes the skin to blister and have open wounds all over the body. This is due to the fact that the genes are faulty in producing the proteins that bind the skin together, collagen 7 gene that anchors the layers of skin together. The skin can blister or tear with heat, humidity, friction, and sometimes just a simple touch. E.B. affects 1 in 20,000 kids and we are known as butterfly children as our skin is fragile like the wings of a butterfly. E.B. can be fatal in the type of Junctional - has the lifespan of about a year and Recessive the type I have has the lifespan of about 35 years. This is due to infection and melanoma and squamous cell carinoma cancers.
For me, wound care takes me about an hour daily and three hours every other day, this is when I have to wrap everything; elbows, hands, knees, and feet. I am thankful that when God made me He made me with a high pain tolerance as sometimes it is painful, but it is not to bad. I have seen others who have gone through tremendous amounts of pain like my younger sister Sarah who also had E.B. Recessive, but due to infection she passed away in 2009 at 20 years of age, but witnessing her strength and love for the Lord, helps me out daily and is impossible to describe just how much it affects me and knowing that someday when it is my time because Jesus Christ is my Savior and paid the price for my sin, I will be with Him in Heaven and pain free and having a new body. Just awesome!
I am creating this Gofundme to help not only myself, but other kids, teenagers, adults living with Epidermolysis Bullosa. I want to participate in a Gene Transfer study out in Stanford California as they have some of the leading researchers in studies with E.B. to help find a cure, as currently there is none. The gene transfer study would take me to Stanford 7-10x over the next year, spending 4-6 days at least with each visit. This is definitely something I want to do, even though it is nerve wracking and way out of my comfort zone, but the Lord gives me my strength and to go forward as I am definitely not one to be a guinea pig and go through painful tests and surgery unless needed, but this is far different than that, bigger than myself.
The $12,500 would provide the financial support for me to be able to go through with the Gene Transfer study. Stanford does cover some of the accommodations, but what they don't cover is on us and also all of the time my mom would have to take off work without pay as she would have to accompany me due to my health and the tests being performed including being put under anesthesia.
Here is what I would be going through in the gene transfer study. This trial will create a graft, which the investigators call "LEAES," of the patient's own skin that has been genetically engineered in the investigators lab to express this missing protein. The purpose of this study is to achieve proof-of-concept for this general approach to cell-based gene therapy in humans and to set the stage for further therapeutic extension in RDEB. The investigators will basically take a subject's own cells, correct them in culture, and then transplant the corrected cells back onto them.
If my goal of $12,500 is surpassed I would love to use the money for my out of pocket monthly prescriptions that are not covered by my insurance and for my schooling at Henry Ford.
I know times are tough and people can't give to everything, so I thank you for taking the time to read about my Gofundme. Now you know a little more about me and E.B. and how rare it is and what is being done in hopes that one day there may be a cure. I ask you to please share this with your family, friends, and social media sites you may be a member of and lastly for prayer. Prayer for God's strength and for His guidance in my life.
Thank you,
Joshua Thurmond
Philippians 4:13 - I can do all things through Christ who strengthens me.
When I was born, 27 years ago it looked like I had a third degree burn on my right foot and after extensive testing I was diagnosed with Epidermolysis Bullosa Recessive Dystrophic (RDEB) or E.B. for short. E.B. causes the skin to blister and have open wounds all over the body. This is due to the fact that the genes are faulty in producing the proteins that bind the skin together, collagen 7 gene that anchors the layers of skin together. The skin can blister or tear with heat, humidity, friction, and sometimes just a simple touch. E.B. affects 1 in 20,000 kids and we are known as butterfly children as our skin is fragile like the wings of a butterfly. E.B. can be fatal in the type of Junctional - has the lifespan of about a year and Recessive the type I have has the lifespan of about 35 years. This is due to infection and melanoma and squamous cell carinoma cancers.
For me, wound care takes me about an hour daily and three hours every other day, this is when I have to wrap everything; elbows, hands, knees, and feet. I am thankful that when God made me He made me with a high pain tolerance as sometimes it is painful, but it is not to bad. I have seen others who have gone through tremendous amounts of pain like my younger sister Sarah who also had E.B. Recessive, but due to infection she passed away in 2009 at 20 years of age, but witnessing her strength and love for the Lord, helps me out daily and is impossible to describe just how much it affects me and knowing that someday when it is my time because Jesus Christ is my Savior and paid the price for my sin, I will be with Him in Heaven and pain free and having a new body. Just awesome!
I am creating this Gofundme to help not only myself, but other kids, teenagers, adults living with Epidermolysis Bullosa. I want to participate in a Gene Transfer study out in Stanford California as they have some of the leading researchers in studies with E.B. to help find a cure, as currently there is none. The gene transfer study would take me to Stanford 7-10x over the next year, spending 4-6 days at least with each visit. This is definitely something I want to do, even though it is nerve wracking and way out of my comfort zone, but the Lord gives me my strength and to go forward as I am definitely not one to be a guinea pig and go through painful tests and surgery unless needed, but this is far different than that, bigger than myself.
The $12,500 would provide the financial support for me to be able to go through with the Gene Transfer study. Stanford does cover some of the accommodations, but what they don't cover is on us and also all of the time my mom would have to take off work without pay as she would have to accompany me due to my health and the tests being performed including being put under anesthesia.
Here is what I would be going through in the gene transfer study. This trial will create a graft, which the investigators call "LEAES," of the patient's own skin that has been genetically engineered in the investigators lab to express this missing protein. The purpose of this study is to achieve proof-of-concept for this general approach to cell-based gene therapy in humans and to set the stage for further therapeutic extension in RDEB. The investigators will basically take a subject's own cells, correct them in culture, and then transplant the corrected cells back onto them.
If my goal of $12,500 is surpassed I would love to use the money for my out of pocket monthly prescriptions that are not covered by my insurance and for my schooling at Henry Ford.
I know times are tough and people can't give to everything, so I thank you for taking the time to read about my Gofundme. Now you know a little more about me and E.B. and how rare it is and what is being done in hopes that one day there may be a cure. I ask you to please share this with your family, friends, and social media sites you may be a member of and lastly for prayer. Prayer for God's strength and for His guidance in my life.
Thank you,
Joshua Thurmond
Philippians 4:13 - I can do all things through Christ who strengthens me.
Organizer
joshua thurmond
Organizer
Westland, MI