patient Advisors

CYSTIC FIBROSIS

Erica Dean

I am the mother to three wonderful children. My oldest, Sophie, has cystic fibrosis. I have been involved in advocating for her healthcare and medicine coverage for the last 13 years. I have worked with local representatives in working to change policies, spoken at events to bring awareness to the problems in our drug coverage policies, and overall challenged our insurers and their handling of her ability to obtain medicines for her cystic fibrosis.

I am very thankful for another opportunity to advocate for Sophie and all those like her that fight for their healthcare rights. I feel that often since they are an orphan disease, we are left out of what others receive easily.

Jennifer Hepworth

I live with my husband of 8 years and my 4 kids in Layton, Utah. My 7-year-old daughter was diagnosed with cystic fibrosis at 3 weeks old, and I have been my daughter’s advocate ever since.

I have spent countless hours advocating for access to drugs both locally and nationally as well as working toward banning copay accumulator programs in Utah. I spend my free time volunteering, sitting on the Intermountain Cystic Fibrosis Parent Advisory Council, advocating for healthcare concerns, figuring out how to homeschool and do distance learning with my children, and as the volunteer chair for my daughter’s school PTO. 

Beverly Tayler, RN

I am a Registered nurse with extensive experience in medical surgery and day surgery, and was a certified case manager for one of the largest insurance companies in the US. While working for the insurance company, I also worked as an investigator of untimely deaths, readmissions within 30 days, and patient complaints. My role was to serve as quality reviewer for providers.   

I found myself wanting to become a patient advocate after our oldest granddaughter was diagnosed with cystic fibrosis. I helped my daughter navigate through insurance hurdles that hampered my granddaughter’s care and finally resulted in physical harm to her. Despite having documented clinical evidence that improper handling of her drugs was a detriment to her health, the insurance  company insisted she continue to receive them that way. In investigating the PBM/insurance connection, I discovered ICER which led me to call Patients Rising. As a nurse and grandmother of a child with a chronic disease, I feel my voice can offer value as I have experienced being the provider and now a patient’s family. It is is my passion to try to educate our society of the systems that are set in place that allow harm to patients and take away their rights for a quality life.

MIGRAINE

 

Tonilyn Hornung

Tonilyn experienced her first migraine over fifteen years ago when she awoke trying to remove the invisible hot waffle iron stuck to her head. She was eventually diagnosed with hormonal migraines. 

While continuing to talk about herself in the third person, she’s a writer whose humorous self-help book How to Raise a Husband: A Whole Bunch of Ways to Build a Strong and Happy Marriage is available anywhere books are sold. Her essays on relationships, parenting, and migraines have been seen in The Washington Post, The Huffington Post, Cosmopolitan, and Good Housekeeping, with one article inspiring Good Morning America to have her interviewed on the show. In between migraines, she’s had pieces published in places like Romper, SheKnows, Mom.com, Pop Sugar, Mother Figure, Ravishly, Today’s Woman Magazine, Folks, and Scary Mommy. Tonilyn lives with her supportive husband, one little boy, and never enough closet space. 

More information about me is here, and here’s a link to my essays on migraines. 

ULCERATIVE COLITIS

 

Alicia Aiello

Born and raised in Philadelphia, PA, I put a little bit of “brotherly love” into everything I do.

I am a graduate of the S.I. Newhouse School of Public Communications at Syracuse University where I studied Television, Radio, & Film.  I now work as a freelance editor, producer, videographer, and photographer.

I was diagnosed with ulcerative colitis at the age of 14 and when I was re-diagnosed with Crohn’s Disease at 22, Girls With Guts was just starting out. My passion for GWG was instantaneous as I had not had that kind of support before.

I have been on the board of Girls With Guts since 2013 starting out as Director of Multimedia, and recently became the new President. I’ve always had a knack for bringing ideas to life and that is where my passion and Girls With Guts merged. If I’m not helping to coordinate the annual Girls With Guts retreat or furthering the overall vision, you can catch me raising awareness about my personal IBD journey whenever I can.

Sarah Lemansky

Hailing from a small town in southeastern Massachusetts, I have a Bachelor of Fine Arts in photography from Lesley University, and I’m currently a photographer primarily working with newborns.  I love to read, listen to true crime podcasts, and spend time with my three guinea pigs and bunny.

After being diagnosed with ulcerative colitis in 2014, I my ostomy in 2016 due to a bout of toxic megacolon and now have a j-pouch.

I like to say that finding Girls with Guts was like coming home, ever since attending my first retreat in 2016. I fell in love with the idea of using art as a means of coping with IBD, and hope to help other women find the same reprieve that I did by helping them to access their creativity.