Meet our staff

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 drkarenthames@epictogether.org or phone at 888-862-5554 Ext. 700 Toll Free

Carolyn Pilgrom

Senior Director of Operations

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 Senior Director of Operations! Carolyn oversees The EPIC Foundation staff, including all EPIC directors, specialists, and volunteers. She is the glue that helps to sustain our mission and our dedication to our patients.

 

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

Erin Gallagher

Director of Patient and Caregiver Support

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 Disease 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, provider relations/credentialing and business management. She currently works full-time for a dental office. Her background in careers, as well as her challenges she has overcome, make her an amazing Director of Patient and Caregiver Support. 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

David Vernier

Director of Website and Business Data

The EPIC Foundation is proud to announce David Vernier as the Director of Website and Business Data. David Vernier received his BS in Interactive & Social Media from DePaul University in Chicago in the summer of 2017.  In his role at The EPIC Foundation, David maintains the website which is a vital part of the organization and he manages databases and other related business affairs.

 

Aside from his role at EPIC, David is currently expanding his design skill set at the Digital Youth Network as a designer with a wide range of responsibilities. One of his responsibilities includes working closely with Evanston middle school and elementary school teachers and students to better understand their needs and help them use DYN’s code65.org platform. David enjoys mentoring youth.

 

David is skilled in Adobe products. He has mastery in design and information technology. The EPIC Foundation is honored to have such an amazing individual on staff!

 

David can be reached by e mail at david@epictogether.org or by phone at 888-862-5554 Ext. 720

Andre Benson

Director of Social Media

The EPIC Foundation is proud to announce Andre Benson as the Director of Social Media. As the Social Media Director, Andre is in charge of managing Facebook, Twitter, Instagram, Pinterest, LinkedIn and other social media platform pages for The EPIC Foundation. These pages reflect the vision and mission of the organization. Andre is vital to the visibility of the organization.

 

Aside from his role at EPIC, Andre is the Founder and CEO of his company, ABenson Media, which he launched in November, 2015. ABenson Media is a full service media company specializing in professional video production and editing. They also offer high-quality, affordable media packages. Andre contributes to The EPIC Foundation in a vital way!

 

Andre can be reached by e mail at andre@epictogether.org  or by phone at 888-862-5554 Ext. 714

 

Dr. Tanya Warren, Pharm.D.

Pharmaceutical Liaison

Dr. Tanya Warren is the Pharmaceutical Liaison for The EPIC Foundation.  We are honored and proud to have such an amazing asset to our Staff! The Pharmaceutical Liaison plays a very instrumental role to our foundation.  Our Pharmaceutical Liaison helps 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 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 tanya@epictogether.org or via phone at 888-862-5554 Ext. 721

Cheryl Dunlap

Director of Development and Networking
Public Relations Specialist

Cheryl Dunlap is the Director of Development and Networking for The EPIC Foundation. She also is the Public Relations expert for the foundation and assures that we maintain important connections with those who are passionate about our mission and vision. Cheryl has a very broad and eclectic professional background. She has had different types of jobs including government jobs, jobs in cosmetology, and event planning.

 

Cheryl’s event planning was born of a desire to fill the gap of the lack of quality entertainment options for the over 30 set; she formed a company that now coordinates weddings and special occasions.

 

During these burgeoning entrepreneurial years, Cheryl also addressed the need to further her education.  While raising a young daughter, Cheryl completed her GED and obtained her Bachelor’s degree in Political Science from Barat College in Lake Forest.  Because of the supportive environment, Cheryl desired to give back to students like her, and remained in higher education, working in a variety of positions.  She went on to complete her MS in Organizational Development and Training from Webster University.

 

Cheryl Dunlap is the producer and host of Soul Suite, a radio show devoted to independent artists, returning stars, entertainers and entrepreneurs.  If it’s new or different, the “Suite Lady” brings it to you in depth on Wednesday nights at 7p.m. on WRLR 98.3 FM in Lake County.

 

Cheryl’s love of music began as a teenager and remained a passion throughout adulthood, where in college Cheryl began her radio career as an intern at WNUA 95.5 FM in Chicago.  Learning the radio business while working with the legendary Ramsey Lewis was a dream come true, and sparked the beginning of her career.

 

As an Event Producer with the Neo Soul Explosion in 2005, a concert promotion company devoted to ushering in the rebirth of soul music to Chicago, Cheryl wore many hats in helping to bring the hottest up-and-coming and independent acts to Chicago each summer.  Artists such as John Legend to Raheem DeVaughn graced the Neo Soul Explosion stage during their rise to the top.

 

The Suitelady is currently on a mission of a musical revolution with her radio show, Soul Suite.  Keeping her eyes and ears out for the new and different in entertainment and philanthropy, the Suite Lady also gives a platform to authors, actors, filmmakers, philanthropists, and tastemakers from across the country to share their work with the listeners.  Her show includes an interactive chat room, allowing the listeners to weigh in and contribute.

 

Cheryl has been a huge supporter of the Cushing’s community for years. She uses her position as producer and host of her radio program to increase awareness. Cheryl has a heart for the chronic illness community, which motivated her decision to work with The EPIC Foundation. The EPIC Foundation is proud and honored to have Cheryl Dunlap as our Director of Development and Networking!

 

Cheryl continues to work hard to increase visibility of The EPIC Foundation so that we can be a voice for the voiceless! She stands behind the goal of empowering the chronic illness community! Cheryl also works to engage others who believe in the vision of The EPIC Foundation and those who desire to support it!

 

If you are interested in developing a partnership with The EPIC Foundation, please contact Cheryl Dunlap.

 

You may also contact Cheryl if you are interested in connecting with Dr. Karen and EPIC Foundation staff for an interview or speaking engagement.

 

Cheryl can be reached via e mail at cheryl@epictogether.org or phone at 888-862-5554 Ext. 722 Toll Free

DaVita Garfield

Marketing and Branding Consultant

As a speaker, author and empowerment coach, DaVita credits the many life experiences and obstacles that she has overcome during her life as the driving force behind her God-given assignment to support other women by encouraging them to become amazing on purpose.

 

Saddled with an unexplained medical crisis in 2012, DaVita fought through stress, depression, frustration and at times anger, to reclaim her health and renew her life. Vowing to never give up on herself, she wanted answers. Her tireless medical self-advocacy finally led to the diagnosis of a rare and life-threatening disease called Cushing’s Disease. After this diagnosis and the discovery of a tumor on her pituitary gland, having learned more about this disease, DaVita’s faith and determination to become healthy became even stronger. In 2014 the tumor was successfully removed however, she was re-diagnosed and faced her 2nd brain surgery in 2017 to remove a tumor.

 

In March of 2015, DaVita founded her company, empoWermentNOW, LLC to provide empowerment and coaching support for women to help them to identify and reach their life goals despite their circumstances.

 

DaVita’s number one role is being a mother to her amazing 13-year old daughter, Aniah Rose. DaVita holds a bachelor’s degree in social work and a master’s degree in health administration and has over 15 years of experience helping people in the healthcare sales field. In September 2016, DaVita celebrated the release of her first self-published book titled, Tell the Whole Story: Embrace Your Journey To be Amazing on Purpose. Tell the Whole Story examines DaVita’s transparent life experiences in areas of childhood abuse, emotional turmoil, adult physical and emotional illness to show the importance of embracing one’s entire life journey to overcome and achieve success on purpose and without apology.

 

DaVita’s most recent accomplishments include her girls mentoring program, her virtual group coaching membership program and the release of her Achieving your Amazing Goals Planner: 2018 edition. The EPIC Foundation is proud to announce DaVita Garfield as its Marketing and Branding Consultant. With DaVita’s help, EPIC plans to reach the highest level.

 

DaVita can be reached via e mail at davita@epictogether.org or via phone at 888-862-5554 Ext. 702 Toll Free

J. Elizabeth Lawrence Dixon, MSW, LMSW

Director of Mental Health and Case Management Services

Elizabeth Lawrence Dixon (Jenn) became ill in late 2009 and went without a Cushing’s Disease/Syndrome diagnosis for 4 years. At the beginning of her journey through illness, she moved across the country to the state of AZ beginning her public service as an AmeriCorps VISTA working in schools. Social advocacy and community action led her to the decision to start a Master of Social Work program in 2010 that was put on hold a year later due to declining health. In 2011 she took her first job in crisis and it was a perfect fit for her. While she struggled with an increase in symptoms she continued to work in crisis and psych facilities in Maricopa County, implementing evidenced based interventions to keep people safe and help them on their road to recovery.

In 2013 she was accepted into a study at The National Institute of Health where she was diagnosed with a tiny tumor on her pituitary gland. Due to the cyclical nature of her form of Cushing’s it took another year to receive surgery at NIH. J. has been in recovery since August 25th, 2014. Shortly after her surgery she became pregnant with her and her husband’s first child who was born healthy on September 11th, 2015. She has a Bachelor of Specialized Studies in English Creative Writing & Gender Studies from Ohio University (2008) and a Master of Social Work from Walden University (2016). She is currently pursuing a Doctor of Social Work and is currently a Travel Social Worker, going from state to state learning new things and meeting exceptional people along the way.

J. Elizabeth Lawrence Dixon can be reached via e mail at jelizabethlawrencedixon@epictogether.org or phone at 888-862-5554 Ext. 701 Toll Free

ShaRita Alexander

Event Coordinator

Born and raised in Evanston, IL, an accomplished educator and entrepreneur.  ShaRita is the founder of Life’s Little Buttons: Where Attention to Detail Matters, LLC.

After completing her educational career at National-Louis University and Concordia University, ShaRita’s passion for events, people and education led her to the entrepreneur sector. Prior to devoting herself to her business full-time, she worked, planned, and consulted on events in several different states landing back home in Illinois.

ShaRita’s gifts of personalization, organization, creative imagination and attention to detail, have earned her a reputation of excellence as an event planner and organizer. ShaRita will execute your concepts flawlessly while maintaining a pleasant, calm and helpful demeanor to ensure an amazing experience for you and your guests.

ShaRita believes in giving back to the community on her own and through her sororities, Delta Sigma Theta, and Delta Kappa Gamma. She lives for volunteering, sponsorship and creating standards of excellence and raising the bar of professionalism.

In her spare time, ShaRita enjoys being a sister and an auntie. The EPIC Foundation is proud and honored to have ShaRita Alexander as their Event Coordinator!

ShaRita can be reached via e mail at sharita@epictogether.org or phone at 888-862-5554 Ext. 711 Toll Free

Volunteer Staff

Rita Gigliotti

Patient & Caregiver Advocate

 

Rita Gigliotti is very happy to be a part of the Patient Advocate & Caregiver team and Advocacy & Outreach team . She is hopeful that her journeys with chronic illnesses, particularly Cushing’s Disease, will allow her to help others who are struggling, cope, and know that they are not alone. Rita was diagnosed with Cushing’s Disease in the Spring of 2017 after at least a decade of being symptomatic. She had a transspehnoidal pituitary adenoma resection on October 26, 2017 and is currently 7 months into her recovery. She is learning the ropes of being secondary adrenal insufficient with recovery, managing the challenges with each phase, and celebrating each small victory along the way.

 

Rita’s passion in life is music. It has also been a healing force throughout many difficult times, especially this past year. She earned a Bachelor of Music and Master of Music in Music Education with voice as her major instrument and piano as her secondary. She has been a public school music educator since 2001 but has been unable to work for the past year due to Cushing’s. She loves being a high school choral director and looks forward to reuniting with her colleagues, students and choir community in the 2018-2019 school year.

 

Rita is from Southwestern, PA but since 2005 has lived in Northern, VA, about 30 miles outside of Washington, DC with her wonderful husband, Francesco and their sweet puppy, Holly.

 

Rita can be reached via email at rita@epictogether.org or via phone at 888-862-5554 Ext. 708.  Together we are EPIC!

Laura Bravo

Patient & Caregiver Advocate

Spanish Speaking Advocate

 

Laura Bravo was born and raised in Cuba. At the age of 13, she was diagnosed with Cushing’s syndrome and had her first pituitary surgery a year after. She and her family moved to Miami, Florida when she was 15 years old. She had a recurrence of the tumor months after she moved and her pediatric endocrinologist at the University of Miami referred her to NIH to have a second surgery. After 4 years feeling like new, Laura started to have high levels of cortisol again, but this time no tumor was seen on the MRI. Laura is right now under medications and waiting to have a third surgery.

 

Even though it’s been hard for Laura to handle her disease and her school at the same time, she has never given up on her dream of becoming a doctor. Laura is working towards a Bachelor Degree in Biology from Florida International University. She is hoping to get into medical school and become a Pediatric Endocrinologist so she can help kids that gone through her same condition at such an early age.

 

Laura has always wanted to help people with chronic conditions. She knows how important it is for those people to feel that they are not alone. She started a blog in order to create awareness about chronic and invisible illness and to educate people on this matter. Thanks to this blog, she met The EPIC Foundation team and fell in love with their work. Laura is very grateful to be part of this organization and hope that with her knowledge and experiences she can change the life of many people.

 

To learn more about Laura’s blog, please visit, https://lmbravo015.wixsite.com/website/home

 

Laura can be reached via email at laura@epictogether.org or via phone at 888-862-5554 Ext. 723.  Together we are EPIC!

Mary Dailey

Patient & Caregiver Advocate

 

Mary Dailey has been with her husband for twenty-two years. Together they have two children and they currently reside in Northeastern Ohio. Mary comes from a large military family. For that reason, she has traveled the world and is bilingual. Her second language is Italian. Mary has an ear and love for other languages and cultures and embraces diversity. Mary has volunteered a great deal in her life and has worked countless hours helping military families by volunteering with organizations like Army Community Services and the American Red Cross. In the final trimester of her first pregnancy in 1999 she became symptomatic of Cushing’s Disease. It was not until 2003 that she received a diagnosis after she went to her OBGYN for answers because she began having irregular periods, excessive weight gain with crazy mood swings, and noticed physical changes in her face and body. Thankfully, her doctor had met Mary before she had become ill (when she only weighed 125 pounds) so when he didn’t recognize her at her appointment he knew there was something clearly wrong. After doing some blood work to check for PCOS and seeing a significant abnormality, he referred her to an endocrinologist. Mary’s endocrinologist ordered several tests including an MRI which showed that she suffered from Cushing’s Disease.

 

During her journey with Cushing’s, Mary developed secondary illnesses such as type two diabetes and hypertension to name a few. After several reoccurrences with pituitary tumors, her doctor at the Cleveland Clinic suggested the Gamma Knife radio surgery which she happily agreed to do. Finally, after years of medications like Ketoconazole and Korylm she decided to have a bilateral adrenalectomy so that she could beat Cushing’s for good. It required some lab work to see if she was a candidate for the surgery. After going in for results of the tests and a multitude of prayers from her husband and loved ones, she discovered that she was in remission in 2016 and no longer needed the BLA!

 

Throughout her struggles with chronic illness, Mary was blessed with so many wonderful people who reached out to her in the Cushing’s community. Dr. Karen Thames was one of her sources of inspiration and because of her mission and vision she chose to pay it forward and make a difference in others’ lives who are battling chronic illness. Mary is deeply influenced by her faith and her love for helping others. She greatly admires Mother Teresa and her life’s works. One of her favorite quotes is “Spread love everywhere you go. Let no one ever come to you without leaving happier.” Mary’s goal is to do just that by sharing EPIC’s mission which is Empowering People with Invisible and Chronic Illness.

The EPIC Foundation is proud to have Mary Dailey on staff as a Patient and Caregiver Advocate!

 

Mary Dailey can be reached via e mail at mary@epictogether.org or via phone at 888-862-5554 Ext. 706 Toll Free

 

Together, WE are EPIC!

Jenifer Williams

Patient & Caregiver Advocate

 

The EPIC Foundation is proud to have Jenifer Williams as a patient and caregiver advocate. In her own words:

 

“My name is Jenifer Williams. I am a certified dental assistant with a background in medical/dental and criminal justice. I am currently working as a manager and web page designer for an e-commerce site called Fireplace Doors Online.

 

I live in Bear Lake, PA (Warren County) with my husband, two children, and 3 dogs. We enjoy living out in the country! Every year we grow a garden, and this year we’re raising chickens so we can have our own fresh eggs. We are also fortunate enough to have a small piece of a national natural landmark, Tamarack Swamp, right in our backyard. http://docs.dcnr.pa.gov/cs/groups/public/documents/document/dcnr_20032479.pdf  

 

We love getting to see the abundant wildlife from our deck or kitchen window, including bald eagles, ducks & geese galore, bear, deer, fishers, and all kinds of other critters!

 

I always knew there was something not quite right when I was growing up. Before high school started, I began gaining weight in spurts and couldn’t seem to figure out why. I went on diets, started exercise programs, and even attempted an appetite suppressant regimen. Once I stopped the pills, it seemed like the weight piled on. By the time I was 17 years old, I remember being embarrassed to wear my hair in a ponytail for fear of people catching glimpse of the hump at the base of my neck – which at the time, I attributed to poor posture.

 

As the years passed, I continued to gain weight despite my best efforts to follow a healthy diet and exercise lifestyle. Sleepless nights, heart palpitations, anxiety, mood swings, and painful menstruation plagued me. I feared that I would suffer a heart attack and die some nights as I lay there listening to my heart pound. At the time, I was in a relationship that was rocky for the most part, and I thought a lot of my stress and anxiety must be stemming from that.

 

By the end of 2001, I had broken things off with my boyfriend and soon met my future husband, Charlie. I was well over 225 pounds by then, but unlike my former boyfriend, Charlie told me repeatedly how beautiful and special I was. We fell in love and in 2003, we were married. I was feeling terrific – happy and healthy! But by 2005, the health issues started to rear their ugly heads: high blood pressure, high cholesterol, hypothyroidism, and GERD. Despite all of this, I became pregnant and although I fought with very high blood pressure and severe edema, our healthy, gorgeous daughter was born in August of 2006.

 

I found out I was pregnant again only a short 5 months later. If I thought that pregnancy was rough, I was in for a surprise. At 12 weeks pregnant, I had to have emergency surgery to remove my gallbladder. In light of this obstacle and the onset of gestational diabetes, my son was born healthy and strong in October 2007.

 

My health seemed to stabilize after I had the kids until 2010. I already had a plethora of health issues, started gaining weight again, and was then diagnosed with insulin resistance, PCOS, and fatty liver disease. Blood tests revealed that I had high cortisol and ACTH. Intrigued, I started my own research and that is when I found out about Cushing’s disease. My endocrinologist blew it off and told me I was “just fat all over” and that the disease was far too rare. Over the next 3 years I became sicker, bigger, and more frustrated. I took my case to another endocrinologist for a 2nd opinion. She laughed in my face when I asked her about Cushing’s and said that perhaps if I didn’t overeat and got up and moved, that I wouldn’t be in her office complaining. I started crying after she gave me a box of “magic pills” – these were supposedly Metformin in its “truest form” – without fillers and “guaranteed to work.” Horrified, I left and never went back to her. Instead, I bit the bullet and called Cleveland Clinic. As it turns out, that was the best decision I have ever made in my life.

 

After my endocrinologist in Cleveland saw my past blood tests, including testosterone and aldosterone levels that were higher than a teenage boy’s, she leveled with me that there was definitely something wrong and it could very well be Cushing’s. After two months of consistently high cortisol levels and going through other routine tests, I had an MRI on a Friday. By Monday, my endo called me with the “best news” I’ve had in my life – I had a 5x4x3mm tumor on my pituitary gland. I had Cushing’s disease – I had an answer!!

 

On the morning of August 18, 2014, a young man literally ran me on my hospital bed down the hallways of Cleveland Clinic’s P Building to the operating room where my neurosurgeon and ENT awaited me. My tumor was removed and the surgery was deemed successful after post-op cortisol levels plummeted to less than 0.

 

The road to recovery was difficult, as I endured a right 6th nerve palsy and was crossed eyed for a couple weeks after my surgery. Eleven months later, I had to have a hysterectomy. Seven weeks after that, I had an infection and underwent another surgery to remove the sac of necrotic fluid and surrounding tissue (I was hooked up to a wound vac for a month). In 2017 after repeated infections in my sinuses, I had surgery to widen the sinus cavities on my right side. Weight loss has been extremely slow, and I have endured more bouts of depression than I care to admit to. But the fact that I came off steroids after 2 years and haven’t experienced a tumor recurrence in 4 years is a blessing! I am luckier than most.

 

Meeting Doc Karen, Janine Gilbert, and several other members of The EPIC Foundation, Women Empowered Now group, and Cushing’s community has been such a tremendous help for me! It has given me purpose again. By being positive and uplifting for others, it has put my mindset on a different track altogether and helped me heal over the past several months. I also developed my own website – www.coulditbecushings.weebly.com  – and I get some pretty good feedback from visitors from time to time. I am excited to be a patient advocate for The EPIC Foundation and hope that I can help others through my experience and knowledge!”

Jenifer Williams can be reached via email at jenifer@epictogether.org or via phone at 888-862-5554 Ext.707.

 

Together we are EPIC!

Alison Crawford

Patient & Caregiver Advocate

 

The EPIC Foundation proudly announces Alison Crawford as a Patient and Caregiver Advocate! The role of the patient and caregiver advocate involves providing support to patients with chronic illness as well as caregivers.

 

Alison belongs to a team that makes calls to patients, responds to written correspondences, and promotes advocacy to patients who want to thrive with chronic illness! Alison is just a phone call away and is committed to providing the kind of support that she has sought throughout her own journey. This team is also available to caregivers who seek support from our foundation!

 

Alison, herself, has had a long battle with a rare life-threatening illness, called Cushing’s disease. She has done everything in her power to self-advocate, self-empower, and get an adequate diagnosis and treatment. Alison is also passionate about increasing awareness of rare illnesses including Cushing’s disease.

 

Alison attends conventions and rallies that help to raise awareness including a gathering in Washington D.C. for rare disease day in February. If you are a patient or caregiver in need of support, call Alison today!

 

Alison can be reached via e mail at alison@epictogether.org or phone at 888-862-5554 Ext. 710 Toll Free

Elizabeth Grenon

Patient & Caregiver Advocate

Elizabeth Grenon lives in Dawson City, Yukon, Canada with her husband and three dogs. If you ever watched the TV show Gold Rush, Dawson is the place that they refer to as the Klondike.

 

She was diagnosed with Cyclical Cushing’s in 2008 and has since had two failed pituitary surgeries and a CSF leak that caused meningitis, a bilateral adrenalectomy (Addison’s Disease), Rapid Arc Radiation (similar to gamma knife radiation) and after everything is currently diagnosed with Nelson’s Syndrome.

 

She is excited to have the opportunity to help and support people in the way she was helped during her ongoing battle with Cushing’s. Through all her struggles she was able to connect with other people just like her, people who could truly empathize with her and what she was going through and she wants to pay that forward.

 

One of her favorite quotes that has helped her keep moving forward and knowing that everything happens for a reason is by Wayne Dyer;

 

“Each place along the way is somewhere you had to be in order to be here.”

 

Elizabeth can be reached via e mail at elizabeth@epictogether.org or phone at 888-862-5554 Ext. 709 Toll Free

Kim Quinn

Patient & Caregiver Advocate

The EPIC Foundation proudly announces Kim Quinn as a Patient and Caregiver Advocate! The role of the patient and caregiver advocate involves providing support to patients with chronic illness as well as caregivers.

 

Kim belongs to a team that makes calls to patients, responds to written correspondences, and promotes advocacy to patients who want to thrive with chronic illness! Kim is just a phone call away and is committed to providing the kind of support that she has sought throughout her own journey. This team is also available to caregivers who seek support from our foundation!

 

Kim, herself, has had a long battle with a rare life-threatening illness, called Cushing’s disease. She has done everything in her power to self-advocate, self-empower, and get an adequate diagnosis and treatment. Kim seeks to increase awareness of Cushing’s and is passionate about being a part of a team that provides adequate support and helps others advocate for themselves.

 

Kim can be reached via e mail at kim@epictogether.org or phone at 888-862-5554 Ext. 719 Toll Free. Together, We are EPIC!

Kellyanne Helsel

Patient & Caregiver Advocate

In Kellyanne’s own words:

 

My Name is Kellyanne and my life has been devoted to helping others. Whether it be in the operating room, labor and delivery or working in an OB/GYN office for 17 years.  During these years, I had 2 boys and raised them by myself into fine young men.  I became a Scoutmaster of a boy scout  troop of 42 boys. Besides camping and hiking, my focus was to teach about community service and fundraising.  During my adult life, I have volunteered for The Cancer society, Juvenile Diabetes Association, Builders charity Fund, Doors to recovery, Vestibular Association, and facilitated support groups and had additional training in journal facilitating and Grief counseling for parents that had lost their babies before, during, or after delivery.  I also became Ambassador for the Vestibular Association, Patients like me and Viewbug.  My first passion is photography, which allows me to donate my work to nonprofit silent auctions. I also enjoy making jewelry, gardening, cooking and painting.  I have helped with Blood donations drives, bone marrow drives and Toy drives to children’s hospitals. 

 

I, myself, became ill with an invisible illness that is extremely rare and has no treatment or cure and that made my next purpose to help others with invisible illnesses with their journey.  The EPIC Foundation seemed like a perfect fit.  So I am honored to be a Patient and Caregiver Advocate for this wonderful foundation.

 

I can be reached by e mail at kellyanne@epictogether.org or by phone at 888-862-5554 Ext. 717. Together, We are EPIC!

Janine Gilbert

Senior Editor/Creative Consultant

 

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 janine@epictogether.org or via phone at 888-862-5554, Ext. 716