A Twist of Fate-ATS was founded to find a cure for arterial tortuosity syndrome. My son was diagnosed at age two, has had 3 heart catherizations, several balloons, one stent, and open chested surgery to reconstruct his pulmonary artery. He is the first ATS patient in the United States to have had this procedure done. I can't explain with words what it is like to hear physicians say they don't know what your son has, what his prognosis is, or even what the next step is; other than his heart is enlarged due to the increased pressure and if they don't do something soon, he won't be stable for long. I am always researching trying to find latest information written on ATS, and conversing with doctors from all over the world. In March of 2014, 3 new ATS families contact me about a week a part. This was extraordinary news considering the first gentleman that contacted me is 53, the second is a young man who is 18, and the other person is a 33 year old woman. It became quickly obvious that we needed an official patient group and if we wanted more research, more information, and to save our children and new friends that the next step was to form a nonprofit.
We have been able to assist the older gentleman with his primary diagnosis, the younger man has had full body scans for the last several years, which will provide a plethora of information to the medical community, and the young woman was not diagnosed until her pregnancy, giving all the families with young female children with ATS, great hope for their future.
A Twist of Fate-ATS is a 501c3 nonprofit and is the only international patient group for ATS.
"Our mission is a world wide initiative to find a cure for arterial tortuosity syndrome, by supporting research, education, awareness, and families."
Currently we are working on the following projects:
**We have partnered with Arkansas Children's Hospital in Little Rock, Arkansas to start the 1st ATS/Carrier Multidisciplinary Clinic in the world. The first clinic date was June 27 & 28, 2016, and was headed by Dr. Yuri Zarate (Geneticist) and supported the Connective Tissue Clinic Director, Dr. Tom Collins (Cardiologist). We were also able to partner with Dr. David Warner and Dr. Joshua Hardin from the Jones Eye Institute for in-depth eye examinations. When we say Multidisciplinary, Clinic, we mean you will be able to see multiple doctors in the different specialty areas you need to see in one visit, instead of having to schedule many appointments on different days. The wonderful thing about the way this clinic works, is all of the doctors you see, will work together to make the best treatment plans possible. No information gathered about your health is wasted, we are on the cusp of learning many things about ATS and you will be able to participate in any available ATS related research if you are interested. We are also working with Arkansas Children's Hospital on research to better understand the phenotype characteristics of ATS, and help change the way Arterial Tortuosity Syndrome is diagnosed and treated.
We are booking U.S. patients to be seen, if you are interested in being seen in this unique clinic, please message us here.
**The second ATS/Carrier Multidisciplinary Clinic will open in Belgium the summer of 2017, with our ATS Medical Director, Dr. Bert Callewaert, date to be announced and more information coming very soon! We are very excited about fully supporting ATS/Carrier needs and research world wide.
**ATOF has been instrumental in initiating around 10 research projects on ATS in the last two years, since our short inception. We are aggressively working to add more research projects on ATS everyday and are looking for several journal article publications very soon on our supported projects.
*We are assisting The University of Pittsburg to obtain additional funding to complete their study on ATS, using Zebrafish to find a medication that cease the abnormal growth of the arteries caused by ATS. If you are interested in reading some of the research that has already been done during this study please, click here.
*Cambridge BioMarketing Advertising Agency has chosen ATS as their pro-bono project of the year and we are assisting them with patient stories, information, and supplying them with contacts with expert physicians on ATS, you can check out what they are doing by going to www.arterialtortuositysyndrome.com.
If you would like to support A Twist of Fate-ATS, on our mission please click here.
We have been able to assist the older gentleman with his primary diagnosis, the younger man has had full body scans for the last several years, which will provide a plethora of information to the medical community, and the young woman was not diagnosed until her pregnancy, giving all the families with young female children with ATS, great hope for their future.
A Twist of Fate-ATS is a 501c3 nonprofit and is the only international patient group for ATS.
"Our mission is a world wide initiative to find a cure for arterial tortuosity syndrome, by supporting research, education, awareness, and families."
Currently we are working on the following projects:
**We have partnered with Arkansas Children's Hospital in Little Rock, Arkansas to start the 1st ATS/Carrier Multidisciplinary Clinic in the world. The first clinic date was June 27 & 28, 2016, and was headed by Dr. Yuri Zarate (Geneticist) and supported the Connective Tissue Clinic Director, Dr. Tom Collins (Cardiologist). We were also able to partner with Dr. David Warner and Dr. Joshua Hardin from the Jones Eye Institute for in-depth eye examinations. When we say Multidisciplinary, Clinic, we mean you will be able to see multiple doctors in the different specialty areas you need to see in one visit, instead of having to schedule many appointments on different days. The wonderful thing about the way this clinic works, is all of the doctors you see, will work together to make the best treatment plans possible. No information gathered about your health is wasted, we are on the cusp of learning many things about ATS and you will be able to participate in any available ATS related research if you are interested. We are also working with Arkansas Children's Hospital on research to better understand the phenotype characteristics of ATS, and help change the way Arterial Tortuosity Syndrome is diagnosed and treated.
We are booking U.S. patients to be seen, if you are interested in being seen in this unique clinic, please message us here.
**The second ATS/Carrier Multidisciplinary Clinic will open in Belgium the summer of 2017, with our ATS Medical Director, Dr. Bert Callewaert, date to be announced and more information coming very soon! We are very excited about fully supporting ATS/Carrier needs and research world wide.
**ATOF has been instrumental in initiating around 10 research projects on ATS in the last two years, since our short inception. We are aggressively working to add more research projects on ATS everyday and are looking for several journal article publications very soon on our supported projects.
*We are assisting The University of Pittsburg to obtain additional funding to complete their study on ATS, using Zebrafish to find a medication that cease the abnormal growth of the arteries caused by ATS. If you are interested in reading some of the research that has already been done during this study please, click here.
*Cambridge BioMarketing Advertising Agency has chosen ATS as their pro-bono project of the year and we are assisting them with patient stories, information, and supplying them with contacts with expert physicians on ATS, you can check out what they are doing by going to www.arterialtortuositysyndrome.com.
If you would like to support A Twist of Fate-ATS, on our mission please click here.
Our Board of Directors
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Andrea Taylor: President/Founder of A Twist of Fate-ATS, over 10 years experience with arterial tortuosity syndrome, mother to Aiden, the first U.S. ATS patient to have had pulmonary reconstruction surgery. St Francis Children's Hospital Family Advisory Counsel, National Organization for Rare Disorders Oklahoma State Lead for 2015 and 2016, active advocate for Heartland Genetics Collaborative, 2015 NCC Family Advocacy training, Arkansas Children's Family Advisory E-Council, Partners in Policy Making Graduate, 2018 LEND Family Mentor, co-author on ATS related medical posters, abstracts, and medical journal, experienced in Public Policy, Grant Writing, Patient Advocacy and Disability Rights.
Jade Day: Vice President: Committee Chair: Partners in Policy Graduate, Patient Advocate, experienced in Public Policy, Complex Medical Care, Rare Diseases, Patient and Disability Rights, and citizen of the Cherokee Nation of Oklahoma Kelly Hoops: Secretary: RN, specializing in pediatric cardiology Sky Collins: Treasurer: company VP, experienced with Quickbooks and business management, Partners in Policy Graduate, Developmental Disabilities Advocate and Public Policy Ginger Tims: Committee Chair: over 25 years’ experience in business accounts and management Susan Stevens: Committee Chair: experienced experience in medical process, patient accounts, and physician liaison Dana Hageman: Committee Chair: Founder of the Arkansas CHD Coalition and of the Little Rock, AR chapter of Mended Little Hearts, mother of two CHD children, National Advocate Leader for MLH, experienced in Public Policy and Patient Advocacy |
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Our Medical Advisory Board
We are proud to list the following specialists on our Medical Advisory Team. They will be helping us make changes to how ATS is diagnosed, treated, and on all of the research availability.
ATOF MEDICAL DIRECTOR
Bert Callewaert, PhD
Dr. Bert Callewaert is a Clinical Geneticist at the Center of Medical Genetics, Ghent University Hospital, in Belgium. Dr. Calewaert is currently working on several research projects on ATS and has been involved in several medical publications on the rare syndrome as well as many others. If you would like to learn more about Dr. Callewaert and his research, please click here.
CARDIOLOGISTS:
Eudice Fontenot, MD
Dr. Eudice Fontenot is an Associate Professor of Pediatrics (Pediatric Cardiology) at the University of Arkansas for Medical Sciences and is a practicing physician at Arkansas Children's Hospital. In 2004, Dr. Fontenot accepted the challenge to develop and direct the Pediatric Cardiology Fellowship Program at UAMS and ACH.
He has been Aiden's cardiologist and has been involved in his care since before his diagnosis of ATS in 2010. Words can never express how thankful we are for him, his expertise, and extreme care with Aiden. If you would like to learn more about Dr. Fontenot, please click here.
Harry "Hal" Dietz, MD
Dr. Hal Dietz is a Professor of Pediatric Cardiology at Johns Hopkins Children's Center and is the Director of the William S. Smilow Center for Marfan Syndrome Research. Dr. Dietz has seen several ATS cases over the years and continues to follow several of our children. If you would like to read Dr. Dietz story on ATS, please click here.
GENETICISTS:
Zsolt Urban, PhD
Dr. Zsolt Urban is a molecular geneticist and is an Associate Professor at the University of Pittsburg in the Department of Human Genetics. Dr. Urban has been working on several studies on Arterial Tortuosity Syndrome including research with Zebrafish models, along with research on many other genetic anomalies. If you would like to learn more about Dr. Urban and his research, please click here.
OPTHAMOLOGY:
David B. Warner
Dr. David Warner is an assistant professor and director of the cornea service area of the Department of Ophthalmology, in the UAMS College of Medicine. He sees patients at the Harvey & Bernice Jones Eye Institute. His special interests include corneal transplants, refractive surgery, cataract surgery and external diseases of the eye. Dr. Warner received a M.D. with Distinction in Research from the Saint Louis University, and he completed a transitional year in Internal Medicine from Forest Park Hospital, also in St. Louis. He completed his ophthalmology residency at the Jones Eye Institute, where he received an academic achievement award and a resident teaching award. Dr. Warner completed a fellowship in Cornea, External Disease & Refractive Surgery at the University of Florida in Gainesville.
He has jointed our efforts with ATS in the summer of 2016, when one of our patients was referred to his clinic with an unusual presentation of keratoconus/pellucid. Dr. Warner is actively involved in arterial tortuosity syndrome research and is accepting new patients and carriers. If you would like to read more about Dr. Warner, please click go to: http://doctors.uamshealth.com/profile/?pid=2772
**Please note our Medical Advisory Board section is under construction**
We want to thank each and every person serving on our Medical Advisory Board, each one of these wonderfully brilliant individuals offers such a unique perspective on ATS and will be key to helping us save those that are effected by this syndrome. We are not finished adding members and will be updating soon, please check back often to read about our Medical Advisory Board members.
Aiden and Dr. Eudice Fontenot at his clinic visit, 11/14
