Committees Bios

Director of Mental Health, Emotional Support, and Advocacy Committee

Alicia Held, MSW

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 worked as both a Pediatric Medical Social Worker and as a Counselor for children in state custody. She loved working with children, especially those who had faced trauma, 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. Alicia is excited to be a part of the EPIC community, and looks forward to helping raise awareness about the significant impact chronic illness, like Cushing’s, has on mental health.

 

The EPIC Foundation proudly announces Alicia Held as Director of Mental Health, Emotional Support, and Advocacy! Her desire to help others and her professional background lend to her making the patient’s experience with EPIC a very positive one. She will do whatever she can to ensure that you get the support that you need!

 

Alicia can be reached via e mail at alicia@epictogether.org or phone at 888-862-5554 Ext. 704 Toll Free

Co-Chair- Mental Health, Emotional Support, and Advocacy Committee

Terri Milam, RN

Terri Milam has graciously accepted the job of co-chairing the Mental Health, Emotional Support, and Advocacy committee. The Mental Health, Emotional Support, and Advocacy Committee advocates for YOU! Often times, we feel helpless and voiceless in the midst of surviving and living with a chronic illness. The EPIC Foundation wants to stand up for its members and to be a voice for its members.

Terri is very familiar with the role of advocate, as she has extensive experience in the nursing field. She has always made it her primary goal to give her patients a voice and to make sure that their needs are taken care of.

Terri was a hospice nurse for many years. Her level of compassion and ability to comfort are qualities that cannot be learned but are innate parts of who she is.

This is why The EPIC Foundation is so honored that Terri has decided to join our team of dedicated advocates for our members. Terri is leading an entire committee of members who are giving of their skills and talents to ensure that you, our members, feel heard!

If you are having an issue that needs an advocate, please do not hesitate to contact our team!

Together, we are EPIC!

Terri Milam, RN, can be reached at terri@epictogether.org or Toll Free at 888-862-5554 Ext. 710

Chair- Patient and Caregiver Support Committee

Erin Gallagher

The EPIC Foundation is proud to announce Erin Gallagher as Chair for the Patient and Caregiver Support Committee. The patient support committee is vital to the mission of The EPIC Foundation. This committee understands that patients need support during every part of their journeys: diagnostic, treatment, and even during recovery and remission.

 

Erin Gallagher currently resides in Cincinnati, Ohio with her partner and three dogs.  She is eager to finally begin her lifelong soul mission, which is to help others and offer love and support throughout life’s challenges. Erin is a Cushing’s Disease and Addison’s Disease warrior. After having two failed pituitary surgeries and a bilateral adrenalectomy, Erin battled hard to become the new her. Her passion is to educate others about the struggles in finding a diagnosis and about the challenges Cushing’s Disease and Addison’s warriors face.

 

She graduated from the University of Dayton with a degree in psychology and communication, and has a well versed career in the dental field and business management. She currently works full-time for a dental insurance company as a Provider Relations and Credentialing Specialist. Her background in careers, as well as, her challenges makes her an amazing chair for the patient support committee. You will find her to be the perfect blend of strength with a heart of gold. She will help you find the new you on your journey as well as be your loyal support.

 

In her free time, you will find Erin living life to the fullest. She loves hiking on trails and loves being outdoors. Even though Erin has Addison’s Disease, she does not let that stop her from leading a normal life. She wants to help others be able to do the same. One of the quotes that Erin lives by is, “Do not go where the path may lead, go instead where there is no path and leave a trail.” Ralph Waldo Emerson

 

Erin can be reached via e mail at erin@epictogether.org or phone at 888-862-5554 Ext. 715 Toll Free

Co-Chair- Patient and Caregiver Support Committee

Meagan M. Jenkins

The Patient and Caregiver Support Committee makes sure that the EPIC Foundation maintains a connection with the patients and caregivers who seek support from us. Expect a periodic phone call from us, expect for us to advocate for patients publically, and expect educational materials that will help guide you through the process of living with a chronic illness. The EPIC Foundation is proud to have Meagan as the Co-Chair of this committee!

A message from Meagan Jenkins:

Hello there! I am so eager and happy to help you along your journey ANY WAY that I can.

My name is Meagan, I am almost 31 years old, I live in Wisconsin & am the mother of 3 beautiful kids & am married to my best friend Matt, whom constantly remind me why I still continue to fight thru the recovery of Cyclical Cushing’s.
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.”
Never giving up on YOU~ Meagan
Meagan can be reached via e mail at meagan@epictogether.org or phone at 888-862-5554 Ext. 714 Toll Free

Chair- Development Committee

Carolyn Pilgrom

Carolyn lives in Buffalo, NY with her husband and 2 cats. She works fulltime as a Workforce Analyst for a cloud services company based in Silicon Valley and spends her free time exploring the world of food through her exotic meat private chef service. She is also an avid advocate for small business and consults startups through business planning, funding, and financial forecasting.
Carolyn was diagnosed with Cushing’s Disease in 2009 and had her first of two pituitary surgeries that same year. She went on to have her adrenal glands removed before being declared cured from Cushing’s and began her life as an Addison’s patient. She has been an active part of the Cushing’s community since first self-diagnosing herself from a House MD episode. She has helped to educate many about self-advocating with doctors and pushing through until resolution. Carolyn is excited to be a part of EPIC as a means to continue to educate and campaign for those with life altering chronic illness.

The EPIC Foundation is proud to announce Carolyn Pilgrom as Chair of the development committee. She leads a dedicated team of people who make it a priority that the EPIC Foundation has adequate resources to serve the chronic illness community.

If you would like to make a monetary contribution or help in some way, you can contact our development chair.

Carolyn can be reached via e mail at carolyn@epictogether.org or phone at 888-862-5554 Ext. 703 Toll Free

Director of Website and Business Data

Amber Nicholas-Patterson, MS.Ed.

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 amber@epictogether.org or by phone at 888-862-5553 Ext. 713

Director – Medical Networking and Education Committee

Michelle Mortz Nowalinski

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 michelle@epictogether.org or Toll Free at 888-862-5554 Ext. 708

Together, We are EPIC! #EPICTOGETHER

Chair- Legacy Committee

Meagan M. Jenkins

The EPIC Foundation’s Legacy Committee is solely responsible for honoring the legacy of those we have lost in the community. This committee will specifically focus on honoring those legacies in the most respectful way! It is important to us at The EPIC Foundation that we give honor to your loved one! If you have a friend or loved one who has passed away and you don’t see him/her on our legacy page, please feel free to contact us to allow us to honor your precious loved one!

Meagan has been the dedicated Chair of the Legacy committee since November, 2016. She is totally invested in respectfully honoring the memories of people we have lost. She will continue to honor the legacy of those who lose their lives to any of these illnesses!

A message from Meagan Jenkins, The Chair of the Legacy Committee:

Hello there! I am so eager and happy to help you along your journey ANY WAY that I can.

My name is Meagan, I am almost 31 years old, I live in Wisconsin & am the mother of 3 beautiful kids & am married to my best friend Matt, whom constantly remind me why I still continue to fight thru the recovery of Cyclical Cushing’s.

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.”

Never giving up on YOU~ Meagan

 

Meagan can be reached via e mail at meagan@epictogether.org or phone at 888-862-5554 Ext. 714 Toll Free

Chair- Convention Planning Committee

Dr. N. Karen Thames, PsyD, Licensed Clinical Psychologist

Dr. Karen is the Chair for the convention planning committee. Dr. N. Karen Thames is also the Founder and Executive Director of The EPIC Foundation. As a Cushing’s survivor herself, “Doc Karen” understands the importance of having a community that you can rely on and that will provide you with adequate support. From her adversity came a passion to create an EPIC convention that will bring people together from all over the WORLD! Dr. Karen has been leading a fully dedicated committee of members of The EPIC Foundation who share this goal of creating a life changing event!!!

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!

Additionally, Karen understands the process of identity loss in terms of professional identity when surviving a chronic illness. She recognizes the immense talent and skill within the community and wants to draw that out during this convention. You just wait! It will be a convention you will NOT forget!!!!

Dr. Karen can be reached via e mail at drkarenthames@epictogether.org or phone at 888-862-5554 Ext. 700 Toll Free

Director of Social Media Engagement and Publicity

Autumn Boyet Stinton

Coming to The EPIC Foundation from the Rocky Mountains of Colorado, Autumn is proud to be part of The EPIC Foundation as the Director of Social Media Engagement & Publicity.

Autumn’s education based in Communications, as well as her corporate background in special project management, event development and travel and speaking engagement coordination allow Autumn to offer the Social Media Engagement & Publicity Team direction with the goal of creating engaging content and a public presence that will bring a personable, relatable face to the Foundation.  Her team will focus on fostering an educated, understanding voice that will assist in connecting people looking for help to the EPIC Foundation, as well as a strong focus on ensuring the voice of the EPIC Foundation and it’s members are heard loud and clear.  Autumn strongly believes that awareness saves lives and every voice makes a difference.

Autumn herself is a Cushing’s Disease survivor.  She has worked for the last twelve years to foster and create a strong on-line community to support those who face the challenges directly related to Cushing’s Disease.  It is her personal belief that her journey, while challenging, has given her an opportunity to learn, adapt and grow.  Most importantly, it has given Autumn a voice to share her experience with the goal of helping someone else and bringing greater awareness to chronic illnesses in general.

If you are interested in joining your voice with others to raise awareness, or if you would like to schedule a speaking engagement, interview, or another public appearance with Dr. Karen and The EPIC Foundation, please contact Autumn today via e mail at autumn@epictogether.org or toll free via telephone phone at 888-862-5554 Ext. 719

Together, we are EPIC!