A Twist of Fate-ATS was founded to find a cure for arterial tortuosity syndrome.
It wasn’t until Andrea Taylor’s youngest son was diagnosed, with ATS, at age two. Her son has had 3 heart catherizations, several balloons, three stent stents in the pulmonary arteries, and open chest surgery to reconstruct his pulmonary artery. He is the first ATS patient in the United States to have had this procedure done. She said that she 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. She is always researching trying to find the latest information written on ATS, and conversing with doctors from all over the world. In March of 2014, 3 new ATS families contacted her about a week apart. It quickly became obvious that we needed an official patient group if we wanted more research, more information, and to save our children and new friends; the next step was to form a nonprofit (501c3).
A Twist of Fate-ATS is a 501c3 nonprofit and is the only international patient group for ATS.
**We have partnered with Arkansas Children’s Hospital in Little Rock, Arkansas to start the 1st ATS/Carrier Multidisciplinary Clinic in the world. This first clinic was held June 27 & 28, 2016, and was headed by Dr. Yuri Zarate (Geneticist) and supported by 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 are 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 worked, was 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 in future clinic dates and locations.
**The second ATS/Carrier Multidisciplinary Clinic was started in Ghent Belgium the summer of 2017, with our ATS Medical Director, Dr. Bert Callewaert, The dates of the new clinic dates, to be announced and more information coming very soon! We are very excited about fully supporting ATS/Carrier needs and research worldwide.
**ATOF has been instrumental in initiating over 10 research projects on ATS in the last few years, since its inception. We are aggressively working to add more research projects on ATS every day 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 ceases the abnormal growth of the arteries caused by ATS.
If you would like to support A Twist of Fate-ATS, on our mission please click here.
Board of Directors:
Andrea Taylor: President/Founder of A Twist of Fate-ATS, over 15 years of 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
Carolyn Fox: Secretary: RN, specializing in rare genetic testing and patient advocacy
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 30 years experience in business accounts and management
Susan Stevens: Committee Chair: experienced experience in the 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
Trent Robinson: Legal Counsel
Christopher Zerwas: Committee Chair: VP of Variantyx Labs, specializing in rare genetic conditions, project and research management
Martine Gould, CGC: Committee Chair: Multistate licensed genetic counselor, focusing on rare diseases genetics, and education
Megan, Ransom: Communications Director: MJR Productions, Videographer, Producer, Rare Disease advocate
IF YOU WOULD LIKE TO LEARN MORE ABOUT ARTERIAL TORTUOSITY SYNDROME PLEASE CONTACT ANDREA TAYLOR: andrea@atwistoffate.org
Medical Advisory Counsil:
Check back soon we are still updating our website! We have a great team of M.D.’s and PhD’s that partner and guide A Twist of Fate-ATS.
A Twist of Fate-ATS 