Crawling for Reid 2017

A Young Boy's Fight Against Epidermolysis Bullosa

Crawling for Reid 2017, March 4th 2017

 Adventure Offroad Park & Nature Center in South Pittsburg Tennessee (just North of Chattanooga), will be sponsoring an incredible off-road charity event on March 4th, 2017 called Crawling for Reid.  The event was developed to raise money to support Reid Davis Underwood.  Reid was born on with a devastating skin disorder called Epidermolysis Bullosa (EB). Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that causes painful blistering of the skin and the mucous membranes.  Reid has an especially severe form of this disorder, called Recessive Dystrophic EB (RDEB). This form of EB is characterized by an inability to create Collagen VII, which is one of the proteins that keep the layers of skin together.  RDEB individuals experience widespread blistering on both the outside and inside of the body, disfigurement from repeated scarring and other serious medical problems such as skin cancer.      

Reid is now two years old and has already been through more challenges then most people face in a lifetime. Reid’s skin is so fragile, that he constantly has severe wounds that must be managed.  Wound care usually takes a couple of hours each day and typically involves bleach or vinegar baths to disinfect the wounds. Blisters must also be drained to reduce pressure and pain. Topical ointments are applied to reduce infection and prepare the skin for special bandages. Bandages must be non-adhesive; no tape can be used but instead they are wrapped in gauze.  Pressure points and friction must be avoided. It is a challenge every day to get all this right and keep the wounds from becoming infected.

    As Reid’s parents, Brian and Audra, lived out the daily reality of having a child with EB, they became convinced that they had to try and do something to improve his quality of life. Their search led them to one of the smartest and most compassionate doctors in the world, Dr. Jakub Tolar.  Dr. Tolar runs the stem cell institute at the University of Minnesota.  He and his team have developed a variety of stem cell treatments to both improve the quality of life for EB patients but also to hopefully find a cure for the disorder.

As Reid's family and friends have watched the progression of this horrific disease, it has become increasingly apparent that the best hope for Reid lies in the ability of his doctors to find a cure.

Jacqie Neal

Reid's Aunt

    Reid has participated in a series of cutting-edge treatments that have been designed to reduce the severity of his symptoms.  Reid first participated in an experimental Bone Marrow Transplant (BMT) that was designed to give him healthy stem cells from his older sister, Avery.  This procedure was successful with replacing some of Reid’s damaged cells with his sister’s heathy cells. Despite initial success, the level of replacement cells began to drop, so a second procedure was used to transfer more of Avery’s cells to Reid.  This second procedure has resulted in more therapeutic levels of Avery’s cells being viable, resulting in these cells producing some of the collagen 7 that Reid so desperately needs. The result is that wound healing is occurring better than before. 

     Life is still unbelievably hard for this little boy. At the age of two, Reid’s activity level is increasing. He tries to do much of what a typical toddler would do; crawling, trying to pull up, and trying to play with toys. Unfortunately, even everyday activities that would be no big deal to a typical toddler, still result in severe wounds and Reid still has some chronic wound areas that do not heal.  To address these chronic wound areas, Reid has participated in a third round of procedures. Cells were taken from Avery in a type of microscopic skin biopsy and these cells were grown on a scaffold in the lab. These cells were then placed on the chronic wound areas in hopes that his skin would accept them.  It is too early to tell if the procedure will help, but work with other EB patients has indicated that it may have some benefits. 

     As Reid’s family and friends have watched the progression of this horrific disease, it has become increasingly apparent that the best hope for Reid lies in the ability of his doctors to find a cure.  The exciting news is that Dr. Tolar and his team are on the brink of making this dream a reality.  Bone Marrow transplant is a serious procedure and it has many side effects. Even though healing is better, it is not a cure and children still die from either the procedure or the complications of the disease. Dr. Tolar and his team have been developing a procedure that will allow them to take defective EB cells and transform them into stem cells. They then use gene editing techniques to remove the genetic typo and replace it with the correct coding. The result is DNA that can now produce an inexhaustible supply of cells that can be used in various ways to improve outcomes for EB patients and potentially even cure this disease. This revolutionary finding, that cells can be used to potentially cure genetic disorders, could revolutionize treatment for not only EB, but a host of other genetic disorders.

     The Crawling for Reid event was organized by Reid’s uncle Bobby Underwood to help address Reid’s ongoing medical and life expenses and to raise money to support the work of Reid’s doctors at the University of Minnesota. This is the third year for the event and the off-road community has been incredible in getting behind Reid and his family.  This annual event is sponsored at Adventure Offroad Park (AOP) in South Pittsburg, TN.  Off-road enthusiast from across the southeastern United States come together for a day of great four-wheeling and to participate in a huge raffle that helps to raise additional funds for Reid and his doctors.  Jeeps, trucks, buggies, and ATV’s all roll into AOP and participate in events such as trail rides, a blindfold tennis ball challenge, drag races, and walking through a host of vendor tents filled with all sorts of amazing products. Food vendors are on site and even a bounce-house to help keep the kids entertained. 

     This year’s raffle is going to be truly outstanding.  Participants will have a chance to win many amazing prizes that have been donated by individuals and businesses from the off-road community and beyond.  Just a few of the items to be raffled off include jeep bumpers, winches, sets of wheels, sets of tires, suspension lifts, drive shafts, coolers, fire pits, and custom roll cages. The highlight of the raffle will be when the CFR team raffles off a Polaris RZR XP 1000 ATV.  If the winner of the Razor is present at the event, they will also leave with a bonus package including bead lock wheels and tires, a custom-built cage, and a trailer to haul their new ATV home.  If you are in the Chattanooga area the weekend of March 4th and want to support a great cause, participate in some incredible wheeling with amazing people and have a chance to walk away with some incredible raffle items, AOP will be the place to be. It only costs $25 a person to attend the event day and $50 to enjoy wheeling at AOP all weekend.  Children 12 and under attend for free.

    For more information, check out Crawlingforreid.com. This website includes event information, as well as more information about Reid, EB and the cutting-edge research occurring at the University of Minnesota.  You can also join the event page on Facebook (Crawling for Reid) for the most current information on the event and updates on the ever-expanding list of raffle items being released. If you can’t make it to the event and want to help, you can make contributions on Reid’s GoFundMe page at https://www.gofundme.com/zvth23n8 or by contacting the Crawling for Reid team at crawlingforreid@yahoo.com.

Source: Crawling for Reid


Categories: Healthcare, Automotive, Conventions, Trade Shows, Meetings and Events, Venues, Dermatology/Skin Diseases, Healthcare and Medical News

Tags: Adventure Off Road Park, Crawling for Reid, Dr. Jakub Tolar, eb awareness, Epidermolysis bullosa, off road park, Reid Underwood


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