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About Us,    Kelly Bontrager Founder & President Kelly Bontrager,grew up with her family in Michigan. A close family, they enjoyed many activities together such as boating, drag racing, and travel. Kelly’s love for travel and adventure carried her into adulthood where she enjoyed many train vacations across the country, stopping often to photograph the beautiful sites she encountered along the way. She became an avid golfer and was very active and driven in every pursuit she began. Kelly has two grown children of her own, but has touched the lives of many other children additionally in her younger years. Her desire to help others led her to volunteer for Toys for Tots where, for three years, she collected donations from various Michigan businesses to help underprivileged children in need. Her love for children also inspired her to become a Nanny, where she helped to nurture and rear many young lives through her career. Her previous work as an OR assistant and a CNA prepared her to medically care for one of the babies that was on a ventilator for whom she was Nanny. Kelly's loving outreach was suddenly cut short on the way to work one day when, in November 2005, she was involved in a car accident that changed her life forever. “I have no memory of the accident”, says Kelly, “I only remember being in excruciating pain when I was released from the hospital hours later”. Her symptoms of RSD began three days later, but the medical professionals were not able to properly diagnose or treat her mysterious symptoms. The wonderful family that Kelly had been working for cared for HER over the next few years as Kelly's health rapidly deteriorated. She visited numerous doctors who were able to diagnose the signs of injury to her cervical discs and need for surgery and physical therapy, but were unable to identify that the unrelenting pain was far more perilous than that. She flew home to be close to her family, but neither surgery nor the extensive physical or occupational therapy that followed was able to restore her deteriorating health or mobility. Kelly would finally discover a year later that she was suffering from Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. Her painful journey had only begun. Kelly founded RSD-CRPSLifesavers with the desire to spread awareness of the debilitating disorder that she suffers daily from. Her road with RSD/CRPS is unfortunately typical of many sufferers in that it took years for her to be properly diagnosed due to lack of knowledge and understanding of the medical professionals. “I do not want for anyone else to have to suffer undiagnosed for years as I did, not understanding what was happening to my body and why,” Kelly states. “We MUST be committed to educate every person about this disease, because the earlier we are treated, the more hope we have of maintaining or resuming our function and contribution in our life ”
Colleen Westra Vice President ColleenW@RSDCRPSLIFESAVERS.ORG
Colleen was born and raised in the Kalamazoo, MI area. She married her husband Karl in 1976, and returned to the area to raise her three children. After staying at home with her children until they all were in school. Colleen decided she wanted to become a nurse. She graduated with a Registered Nurse degree from the Bronson School of Nursing in Kalamazoo, MI in 1994, graduating with First Honors, while also receiving the Nurse of the year faculty award. She began her nursing career working nights in Bronson Hospital on the samecardiovascular floor on which she worked as a nurse intern. Finding out that working the night shift wasn’t conducive to raising children, she went to work for a local Neurology office, learning a great deal about neurological disorders. She also went back to school at Western Michigan University, working on her Bachelor’s degree in Science (Nursing) which she received in 2000, summa cum laude. She went on to work for a large auto insurance company, as an Injury Claim Trainer – reviewing claim files as well as training insurance adjuster’s on many medical conditions which may result from an auto accident– including giving a training presentation at the corporate office on what was known then as Reflex Sympathetic Dystrophy. Colleen’s additional nursing positions included a National Account Manager for a medical software company, traveling all over the country, training users of the software, as well managing any and all problems with upper level management of the accounts; working as a Case Manager for a large pharmaceutical company in Drug Safety. While working in this capacity, Colleen became very interested in understanding more about drug clinical trials and again went back to Western Michigan University, completing a graduate certificate in Clinical Trial Administration, summa cum laude. While working in this capacity Colleen was involved as a passenger in a motor vehicle accident in September 2003, in which she fractured several bones in her right foot, after her foot broke the windshield. Despite a great deal of pain which was eventually diagnosed as Complex Regional Pain Syndrome, she continued working for a full year in a great deal of pain with her foot in a CAM walker. As this position was moved out east, she was fortunate to obtain another position within the same company as a Quality Assurance Professional in the Product Complaints unit. Again, after a short period of time, this position was moved east, and Colleen was recruited by a large medical device company in Charlotte, NC to be their Global Clinical Affairs Manager, overseeing many clinical trials in Europe. Prior to accepting this position in 2004, she saw an orthopedic surgeon and was told she needed major foot reconstruction surgery which couldn’t be done until nine months later. She advised them of the situation as well as the time she would be required to be off work – and was told “no problem”. Following the surgery, Colleen worked from home during her disability period, however, was unable to return to work and was terminated from her position. Since that time, she has qualified for Social Security Disability, and has not been able to return to work due to extreme pain and mobility issues. After losing her career, Colleen, as most CRPS patients, had a difficult time with self worth as she associated her professional life with who she was. After going through a significant grieving period of “losing” her prior life, she eventually realized that she alone had the power to decide how much this enemy named CRPS could take from her. While very limited with her mobility, she has learned to embrace and appreciate the important things in her life. Her husband of 33 years is her constant companion – trying his hardest to understand and support her every step of the way. Her grown children, two sons and a daughter, are a source of extreme pride to her. They all have grown into very productive adults who have become very accepting and supportive of her current condition. She also has two grandchildren, who are the absolute loves of her life!! Colleen’s struggle with suddenly becoming disabled, eventually has led her to begin working to raise awareness of CRPS, hopefully to prevent others from finding themselves in the same situation. As a health care professional, she has seen first hand the lack of knowledge of CRPS among her fellow health care professionals, and is vowing to change this. She recently begun a local CRPS support group in her area, and her local newspaper has just completed a health section article on CRPS, identifying the need for increased awareness of CRPS, featuring Colleen and her fellow support group members which will be published soon. It is this strong desire to raise awareness of CRPS that has led Colleen to RSD-CRPSLifesavers. Carrie Brown. Chair Person and Secretary Carrie Brown,Grew up in Omaha, Nebraska. She was an avid athlete most of her life and through out high school,participating in gymnastics ballet and track. Carrie lives in Murfreesboro, Tennessee now with her husband Jeremy, and two girls Alexa and Liliana. Her family enjoys car shows, racing and spending time with each other. She helps to run her husband's family business in Nashville, Tennessee. Carrie also like to cook with her children. Her motto is, "I am a firm believer that laughter is a cure for everything! Without laughter, there is nothing." One night in June 1998, Carrie was out with friends, and involved in a car accident that changed life as she knew it. She was 16 years old at the time, and suffered from multiple injuries. Approximately two days later, she felt the first pain from RSD. She now has full body RSD with organ involvement. It only took a matter of months for the RSD to quickly spread from right side of her neck to her arms and then down to her legs. She went through many doctors to find someone willing to treat her. Because of her age and the severity of her RSD, the first couple of years were spent going back and forth trying to get treatment. "I was still trying to go to school and try and act normal as i could." It didn't take long for Carrie to see that life was going to be not that of a normal 16 year old from then on out. "I want to help bring awareness to others and their families about what it is we deal with every day." Carrie says reflecting on how she could use the knowledge she learned over the years from others with RSD/CRPS. No one knows how many women have been pregnant with RSD. Carrie and Jeremy wanted children, and she was determined she would not let RSD rule her life. The result were two beautiful little girls who give her a reason to get up everyday and fight! "I just want to help children and teenagers learn to live a some what normal life with RSD". "My greatest hope is to show others there is a life beyond RSD and that the sky is the limit"!   |
