Dr. N. Karen Thames
|Founder and Executive Director of The EPIC Foundation
Dr. N. Karen Thames, PsyD, Licensed Clinical Psychologist
Dr. N. Karen Thames graduated with her Doctorate in Clinical Psychology from the Chicago School of Professional Psychology in 2005. She worked primarily in the private practice setting with specializations in trauma, women’s issues, marital therapy, and chronic illness. Dr. Karen offered therapy to individuals, families and couples. She very much so viewed her profession as a fulfillment of her God given purpose in life.
Several years ago, Karen began having symptoms that could not be explained including unexplained rapid weight gain, muscle weakness, memory loss, and the sudden onset of diabetes, high cholesterol, and hypertension. She even became completely bedridden. After being increasingly ill for over five years, Karen discovered that she had Cushing’s Disease after watching a Cushing’s episode on the Discovery Channel show, Mystery Diagnosis. She had fought so hard to get an explanation about what was wrong to no avail. However, after discovering she had the same symptoms as the Cushing’s patient on Mystery Diagnosis, Karen asked her local endocrinologist to start testing her. With hesitation, he finally agreed, and she did, in fact have Cushing’s Disease. Dr. Thames sought treatment from a team of specialists in Seattle, WA at the Seattle Pituitary Center because of their expertise and on November 16, 2011, she had life changing brain surgery in which a tumor was removed from the left side of her pituitary.
After one year of remission after brain surgery, Karen learned that Cushing’s was back. A recurrence of Cushing’s was confirmed by several more months of testing. After weighing all available options, Karen moved forward with having a Bilateral Adrenalectomy on August 21st, 2013, in which both of her adrenal glands (which sit on top of the kidneys) were removed. This was her cure, finally, from Cushing’s Disease! Now, Karen is left with a lifetime of adrenal insufficiency. As a result of the Bilateral Adrenalectomy, Karen is steroid dependent for life and must follow strict maintenance in order to avoid adrenal crises, which can lead to a fatality. However, beating Cushing’s, though a difficult decision, made this choice worth it. Karen currently has ties to both the Cushing’s and Addison’s communities.
Dr. Karen has become a strong voice in the Cushing’s community. With the goal of spreading awareness and encouraging empowerment; she has assumed the role as a Cushing’s patient advocate. Karen has the goal of shedding light on this rare illness that is diagnosed in 1-3 of every million people.
Karen speaks to the needs of those surviving chronic illness and posts educational videos to address the emotional processes of those living with a chronic illness. These videos also include answers to the “Ask Dr. Karen” series where Dr. Karen answers various viewers’ questions on issues related to chronic illness. These can be found on: http://www.youtube.com/drnkarenthames
Dr. Karen is the Executive Producer along with CoProducer and director filmmaker, Marc Harris, on the feature length film, Cushing’s Documentary: “Battleground Diagnosis: The War to Survive Cushing’s Disease/Syndrome”. Dr. Karen Thames felt inspired to use her skills to give back to the community that has given so much to her. She believes in the power of connectedness and community and has been proud to be named an advocate in the chronic illness community! Thus, she founded The EPIC Foundation!
Together, WE are EPIC!!!
Dr. Karen can be reached via e mail at firstname.lastname@example.org or phone at 888-862-5554 Ext. 700 Toll Free
The Mental Health/ Emotional Support Committee of The EPIC Foundation is here for you! They are a committee of mental health professionals who understand the psychological impact of chronic illness on one’s emotional well being and whole self. They are kept abreast of the most recent research on the emotional processes of chronic illness and will use their knowledge to help you. They are not here to provide therapy, rather they are a resource for providing you with support during your time of need.
Meagan M. Jenkins
|Lead Advocacy Specialist
The Lead Advocacy Specialist, Meagan Jenkins, oversees all of the committees, making sure that they continue to be operational. She is the glue that helps to sustain our mission and our dedication to our patients. Meagan is a Cushing’s Disease survivor, herself, and has devoted her life to giving back and helping others. Meagan will ensure that our patients are truly advocated for and supported!
A message from Meagan Jenkins, Lead Advocacy Specialist:
I have a heart to help those around me, and those in need. I do not feel any patient should have to go over 17 years without a diagnosis like I did.
My fight has grown my passion and compassion like I cannot explain. I have had others in my fight, like Melissa Moxie and Dr. Karen to name a few whom have helped me in ways I will forever be grateful, and hope to repay some of that goodwill thru The EPIC Foundation!
I am so delighted that you have found this page, because together we will figure this out. We will fight this. You are not alone!
“When the world says give up, Hope whispers…Try it one more time.”
Meagan can be reached via e mail at email@example.com or phone at 888-862-5554 Ext. 714 Toll Free
Alicia Held, MSW
|Director of Mental Health Services and Case Management
The EPIC Foundation proudly announces Alicia Held as Director of Mental Health Services and Case Management!
Personally, Alicia Held lives in Arizona with her husband and teenage daughter. Alicia has always had a desire to help others and that is why she completed a Master’s Degree program in Social Work in 2002. Alicia has extensive experience as a Social Worker with a broad range of clients from Pediatric Medical Social Work to being a Counselor for children in state custody. She loved working with children, especially those who had faced trauma. Alicia believes in community. She genuinely has the desire to help others and has graced so many people’s lives because of it!
Unfortunately, Alicia had to leave full time employment due to being diagnosed with Cushing’s disease in 2009. In 2010 she had brain surgery to remove a tumor on her pituitary gland. Alicia has been fighting the long-term effects of Cushing’s for many years since, and has also needed another surgery to remove her adrenal glands, which has left her with Addison’s Disease. Alicia continues to advocate for those in the Cushing’s community including desiring better and more consistent diagnostic means as well as better treatment options that provide a cure at a much higher rate than is currently available. In addition, she is passionate about educating both the public and the medical profession about Cushing’s Disease, especially the understanding of how this is a multi-system disease that affects both mind and body and can cause permanent damage, that although may not be visible, is no less life- altering.
The EPIC Foundation is thrilled to have Alicia as our Staff Social Worker! We believe in taking care of the whole person and we know that only addressing the medical issues do not account for every aspect of your needs. We explore the psychological impact of chronic illness and provide emotional support for it. We advocate for you and for your needs, including insurance denials. Additionally, we explore resources for our members that will help them to live the most optimal lives possible!
Alicia can be reached via e mail at firstname.lastname@example.org or phone at 888-862-5554 Ext. 704 Toll Free
Amber Nicholas-Patterson, MS.Ed.
|Director of Website and Business Data
Amber Nicholas-Patterson is an instructional technologist with a background in learning design for online learners, web design and video game design. She is a graduate of both Shepherd University (B.S., Computer Science), and Purdue University (MS.Ed., Learning Design & Technology). She currently runs a video game design program both with and for high school students.
Amber lives in WV with her wife and cats, and loves taking in independent and foreign cinema with her local film club as frequently as possible.
Amber is a survivor of Cushing’s Disease and is now in treatment for hypopitiutaryism. She is excited to join The EPIC Foundation as the Director of Website and Business Data! She is looking forward to utilizing her time and skills to give back to a community that once helped her save her own life.
Amber can be reached by e mail at email@example.com or by phone at 888-862-5553 Ext. 713
Dr. Tanya Warren, Pharm.D.
Dr. Tanya Warren has been a part of The EPIC Foundation team since January, 2017, as the Pharmaceutical Liaison. The EPIC Foundation is honored and proud to have such an amazing asset to our Staff! The Pharmaceutical Liaison plays a very instrumental role to our foundation. The primary role of our Pharmaceutical Liaison is to help us maintain a collaborative relationship with our medical networks and professionals, pharmaceutical companies, and other professionals who are interested in helping us with our mission and serving the chronic illness community. Our pharmaceutical liaison also consults with others to promote the advancement of The EPIC Foundation. Finally, our pharmaceutical liaison engages in academic research that will benefit our members.
Dr. Warren obtained her Doctorate in Pharmacy (Pharm.D.) from the University of Missouri-Kansas City in 2004. She has extensive experience as a Pharmacist in the hospital setting and comes to us with a unique understanding of the chronic illness population. Personally, Dr. Warren is a survivor of a rare life threatening illness called Cushing’s Disease. She understands the value of self-advocacy and has fought, tirelessly, for her own health!
Dr. Warren is a member of The EPIC Foundation and wants to make a significant contribution to other members and to the chronic illness community! She is an invaluable asset to the foundation!
Dr. Tanya Warren can be reached by e mail at firstname.lastname@example.org or via phone at 888-862-5554 Ext. 721
The EPIC Foundation proudly announces Janine Gilbert as Senior Editor. Janine has been a strong advocate in the Cushing’s community for the past several years. Janine has made it her mission to increase awareness of this life threatening illness that is diagnosed in 1-3 of every million people but impacts so many more people than we realize.
Personally, Janine is a survivor of a very rare form of Cushing’s Syndrome. She went years without a diagnosis and finally received help from the team at The National Institutes of Health (NIH) in Maryland.
In her own words, “Cushing’s Syndrome is a rare and silent killer. It is often misdiagnosed or not even diagnosed because the main symptoms are high blood pressure and obesity. I want to help people be able to understand the symptoms and be informed enough so they don’t have to endure what I endured. If undiagnosed, Cushing’s Syndrome can cause irreparable damage and even death. I only hope that by sharing my experience I can prevent someone else from the horrors I have faced.”
Professionally, Janine has experience in the health care system, administratively. She also has vast experience in writing and editing. The EPIC Foundation is honored that Janine is using her skills and expertise to assure that we are at our highest level of excellence.
We know that Together, We are EPIC!
Janine can be reached via e mail at email@example.com or via phone at 888-862-5554, Ext. 716
Michelle Mortz Nowalinski
|Director of Medical Networking and Education
Michelle is the Director of Medical Networking and Education. Her committee is responsible for reaching out to endocrinologists, surgeons, and other doctors that impact our population. People in this committee will actually gain the involvement of doctors towards the research, awareness, and improvement of the various chronic illness communities. This committee seeks to bridge the gap between medical doctors and patients and also mental health professionals and patients. Additionally, this committee actively participates in academic research of literature on the various chronic illnesses we service.
Michelle has a background in Customer Service, Management and was a licensed Cosmetologist, Nail Technician and Facial Technician before becoming disabled due to Cushing’s Disease. Michelle later founded Abundant Organic and Natural Co-Op to help provide cost effective healthy organic and natural whole foods and products for her family, friends and community.
Michelle has fought her way through the medical community for over 12 years pursuing a diagnosis and then a cure for Cushing’s Disease. She is an active patient advocate for the Cushing’s and Addison’s communities as well as other rare diseases that often go misdiagnosed or undertreated and has been known many of times to get on the phone with health care professionals at all hours of the day or night, across the world, not just the United States to make sure you are getting the treatment you need and deserve.
Michelle is very passionate about connecting with physicians, nurses, and their staff as well as building long lasting, informative relationships with the medical and mental health communities. Michelle also has experience in helping patients with financial grants to help cover Co-Pays and Co-Insurance for vital treatments that are sometimes beyond reach without these financial blessings. She believes it is imperative that we have liaisons between the medical community and patients and caregivers to bridge the gap and save lives! The saying that “it takes a village” certainly applies here!
Throughout the years, Michelle has dedicated her time and energy into the Awareness of Invisible Chronic Illnesses. She has worked with her own Doctors as well as other Endocrinologists, Oncologists, Rheumatologist, Infectious Disease doctors, Nurse Practitioners and many more to spread awareness. She has traveled across the country to be educated by some of the most elite physicians in the Cushing’s and Addison’s Community as well as traveled to U.A.B.,University of Alabama Birmingham for all of her treatments, where she has a great relationship with her physicians there. Michelle has also participated as the first Cushing’s Disease patient in a Ground Breaking, new treatment with EDGE Radiosurgery which, at this time, has put her into remission.
Michelle lives in Panama City, Florida. She is a Wife, Mother and MiMi, momma to 2 beloved fur babies, and is a multiple time Cushing’s Disease Survivor beginning her journey over a decade ago. She now has Pan hypopituitarism- the lack of all pituitary hormones and is being treated for several hormone deficiencies as well as another rare Disease ITP-Immune Thrombocytopenia, also known as immune or idiopathic thrombocytopenic purpura. This is a rare bleeding disorder characterized by a low amount of platelets in the blood being treated by IVIG Therapy. Michelle has had 3 Pituitary Surgeries with total Pituitary resection, a Bilateral Adrenalectomy (BLA), Ground breaking EDGE Radiosurgery on both the Cavernous Sinus/Carotid Artery as well as both adrenal beds as well as reconstructive surgeries to help correct the aftermath of the body from Cushing’s Disease.
Michelle is ready to help in any way possible to help anyone in the Invisible Chronic Illness Community, their families and caretakers with Education and Support to navigate the medical community.
Her motto is: ~Sometimes the worst situations are a blessing in disguise. Now live with purpose to help others!
For members looking for empirical research on a particular aspect of your illness, this committee can assist with that. Reach out to them and give them an opportunity to do the research and get back to you. Also, if you have research, articles, or valuable materials that you would like to share with this committee, please feel free to contact them.
If you are a medical professional or mental health professional and are interested in joining us in this effort and desire to form connectedness with the community, please contact us. We are beyond interested in working with you!
Please contact our Director of Medical Networking and Education, Michelle Mortz Nowalinski, at firstname.lastname@example.org or Toll Free at 888-862-5554 Ext. 708
Together, We are EPIC! #EPICTOGETHER
together.org or via phone at 888-862-5554, Ext. 716