I became ill in 2001 and over 4 years saw 51 specialists that could not diagnose my illness. I was handed a Medline study from Christopher Reeves' Neurologist and was told to find the surgeon that performed that study. It lead me to Pittsburgh & Dr Peter Jannetta, Godfather of Modern Neurosurgery. He saved me from becoming a quadriplegic & worse. I never imagined I would develop multiple Rare Diseases at 31 yrs old, I had to learn to live a new limited life and the only way to start was with knowledge, then with helping others when I was well enough, and I have never stopped. I am a Leader in the Rare Disease Community, a Healthcare Activist, and Lobbyist. I have been fortunate to work with 1000's of Rare Disease Patients, Health and Disease Organizations and Foundations, Healthcare Stakeholders, and learned from them all. Now I try and improve Healthcare one day and project at a time.
Private clinical practice to aid in managing transitions, stresses, and crises. Focus on providing alternative care solutions to aid in the successful diagnosis and treatment of individuals who may have experienced grief and loss. Treatment modalities include hypnotherapy, past life regression, life cycle coaching and grief mediation. Animal therapy available including both equine and canine ESAs. Key Note Speaker including Harvard and West Point and TV personality..
Contract Clinical Trial Management: Provides direction, strategic management, oversight, training and support to the team to ensure team delivers quality projects to its clients, and achieves or exceeds clinical trials project goals. Provides industry expertise and leadership to project team on multiple and complex national and international clinical trials, typically in phases Ib, IIb, IIIb, II and III. Acts as the point of escalation between the client and the project team to ensure a successful outcome..
I am a freelance journalist specializing in researching and writing about health related issues. My interest in this field began when I was diagnosed with a little known chronic blood disorder (ITP) and had to do the research to find out exactly what I had. I am also a full-time caregiver for my disabled husband and have interviewed health professionals and other caregivers to succeed at this task.
I have used my skill at searching out answers to write articles for newspapers, blogs, websites, etc on various health related topics.
Ken Taylor has be a caregiver since 2003 for his wife who has multiple chronic pain diseases. Ken is a former licensed insurance agent. Ken worked in the banking industry for 12 years at MCM, Bank of America, Wells Fargo, and Neiheisel Law Firm. Currently, Ken is a broadcast engineer for Dish Network. Ken also serves as the VP of the International Pain Foundation, is on the board of advisers for Pain Pathways Magazine, is the graphics editor for iPain Living Magazine. Ken serves on several pain advocacy coalitions including the Consumer Pain Advocacy Task Force and State Pain Policy Advocacy Network. He is an Amazon best selling author, motivational speaker, and Reality TV Personality sharing his story of caregiving and helping others better understand the healthcare system.
I have worked in the hemophilia world for about 3 years at a specialty pharmacy in Kansas City, MO. I am currently in Pharmacy School pursuing my Doctorate in Pharmacy (PharmD) at the University of Missouri - Kansas City School of Pharmacy. I am a patient with Severe Hemophilia A and have made it a goal to attend as many hemophilia-related events as I possibly can. Aside from my work "behind the counter," I am also an avid public speaker and have spoken in front of large crowds on behalf of the Hemophilia community in an attempt to spear awareness. My most recent endeavor was speaking at a standing-room-only event at the National Hemophilia Foundation's annual conference. Aside from that, I am also well known for a TEDx talk I gave titled "Infusing Hope."
A passionate educator and motivator, Cazandra brings out the best in people. In her role as a Patient Advocate, Cazandra not only helps families struggle well with their diagnosis, but she also empowers people to live their best life in spite of their medical condition.
In her work, Cazandra served as an integral part of a dynamic, national team that cared for individuals with bleeding disorders. She worked closely with the clinical and sales aspects of the organization by organizing events, writing literature, developing programming and providing the "heart" of what a patient lives with everyday. Cazandra is a regular contributor to the Infusing Love blog for the Hemophilia Federation of America, The Mighty, and has been featured on the Scary Mommy blog.
Cazandra's experience as the mother of two sons with hemophilia has given her a deep understanding of how to help others in times of crisis. Her passion is evident in her TEDxABQ talk, "A Prisoner of Hope."
I was born with Hemophilia A, which can be quite a debilitating disorder. However, I have persevered to excel in life and my career. I am a full time attorney but I devote large amounts of my free time to supporting and advocating for others with bleeding disorders. I am happy to speak out at any time and place about hemophilia and to answer any question.