It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here.
Advocate | Arterial Tortuosity Syndrome
- Owasso, OK
- Contact info: Website | Email
- ATS affects approximately 100 people worldwide
- Passionate about:
- General Community Awareness
Why did you become an advocate for your rare disease community? What was happening in that community that made you want to take action?
I knew that my son and other children with ATS would not get the treatments or even answers about the rare disease with out someone fighting to change things.
What was your first success or defining moment as a rare disease advocate?
Obtaining the 501c3 and obtaining a large grant with in a couple of months of each other to host the first International conference.
Share some of your biggest accomplishments as a rare advocate?
1st International conference, started the 1st Multidisciplinary Clinic in the world at ACH, obtainied the first ICD code, starting a second clinic in Belgium in September, wrote the IRB and started the only ATS patient registry with Dr. Bert Callewaert and much more like creating a documentary and fueling research!
Share some of the hard realities you faced advocating for your rare disease.
There is not enough money!!! No matter how bad we want the cure, sometimes there is no cure or hope to have one. No matter how hard you fight sometimes you still loose.
What project(s) are you working on now for your community?
A documentary and hosting a conference this summer in AR and one in Gent, Belgium.
What advice would you give to an advocate just starting out?
Your stronger than you think you are, never be afraid to ask questions, never take No for an answer if it’s what it takes to get your patients what they need!
Why do you find working with advocates from different disease groups beneficial?
I know if something happens I can lay my head down and know I fought the hardest fight of my life and am making a difference in the lives of many others!