BENEFITING: EB Research Partnership
This is to raise fund for EB Research Partnership (www.ebresearch.org) to support the research done by Dr.Jakub Tolar to find a cure for Epidermolysis Bullosa or EB.
Anna is suffering from Junctional EB, a life threatening severe sub type of EB. EB is a rare and fatal genetic skin disorder, which affects children from their birth, in which their body is not producing enough protein to hold their skin together. Children with EB live a painful life every day. There is no cure for EB now. But a great doctor, Dr.Jakub Tolar at University of Minnesota children’s hospital is working very hard to find a cure for EB.
The following video features the music band Pearl Jam's Eddie Vedder and Dr.Jakub Tolar explaining EB along with some EB warriors. https://www.youtube.com/watch?v=QSJvD6msRoo#t=25. Dr.Tolar's research is patented and can be found here. http://www.google.com/patents/WO2014134412A1?cl=en. Also, please find Dr.Tolar's research in the following link. http://www.eurekalert.org/pub_releases/2013-06/uoma-uom060613.php. Dr.Tolar's research focuses on gene editing to correct the incorrect mutation. This research will not only help EB but about 5000+ genetic diseases. Since EB is very rare, there is very minimal government funding. Please help funding to finish his research and start clinical trial . Moreover please help to raise awareness on EB.
There are 1 in 50000 children are affected by EB in US. EB affects all kinds of ethnicities and races. Since kids with EB are missing the protein that holds their skin together, any friction or pressure will cause painful blisters and which will turn into wounds or sometimes the skin can just shear away. EB also affects eyes, internal organs such as airway, esophagus. There is no treatment right now, only prevention and treating the wounds. They have to be wrapped in specialized bandages all over the body. They have to go through painful dressing changes every day which lasts anywhere from 2-3 hours.
My daughter, Anna is 4 years old and she already suffered so much that a person can go through in their entire life time. She has open wounds all over the body which are covered in bandages. She gets painful corneal abrasions, which will take 1-2 weeks to heal. She is in so much pain during that time that she has to be in a dark room until it heals. Because of scarring on her airway, her airway got closed and she has a tracheostomy tube (Trach) to breathe.
Since her airway is closed, she can't talk. She gets painful sores on her mouth, which often won't let her eat. So she has a Gtube. She has to get suctioned from her trach at least every half an hour. And on the days she gets sick from cold or flu, she has to be suctioned every 10 minutes and has to be on oxygen and ventilator.
When she was just 2 weeks old, she started developing blisters on her leg and soon she is diagnosed with Junctional Epidermolysis Bullosa. It took more than one year for us to get into terms with the fact that she has this cruel disease, and we have to deal with this every day of our life. When she was born, there was no cure, and very minimal research going on. But now things are looking a little more hopeful. We are so close to find a cure.
I want a cure. I want to help my baby from her pain. I want to give her a normal life. She is in hope. She is waiting each day for a treatment to come. That is what keeping her or us to go forward. Can you help us to get this goal? Can you help her dream come true? A day without pain, a day without trach, a day she can talk and sing, a day she can take a bath without pain and a day she can run and play with her little sister and other kids, a day she can sleep without itching.
Please help raise funds for EB research. 100% of the funds raised here will go to EB research partnership (EB research partnership is a joint effort from Jackson Gabriel Silver Foundation and Heal EB), which is an organization dedicated to fund Dr.Tolar's research.
Please note that when you make donation, you will be asked to enter an optional processing fee by CrowdRise. You can change the amount in that and even set to 0.
Anna's FB page: https://www.facebook.com/AnnaCureEB
Thank you for your help, kindness and prayers..