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.
My name is Amanda Chaffin and I’m the mother of two wonderful boys. My youngest son, who was born in 2013, has spinal muscular atrophy type 1, or better known as SMA.
When he was diagnosed there was no treatment options available, due to the progression of the disease. He’s now trach and ventilator dependent as well as uses a g-tube for his nutrition. I’d love to help other parents going through this diagnosis as so much has changed in the SMA community during my son’s lifetime. I was thrilled to be among those who advocated for mandatory newborn screening for SMA in Oklahoma, and as of March 2021, those screenings have started.
My son is currently taking medication and is seeing amazing results. Now we have two different treatment options and a third coming soon.
Darla S. Bell
Darla S. Bell is a patient advocate, a board member of Patients Rising, and an energy executive who lives in Dallas. Darla has a chronic condition that requires the use of specialty medication. She knows first-hand the barriers that patients face throughout the healthcare system. She has written about this issue in the Austin American-Statesman.
Darla is a leading advocate against the use of Copay Accumulator Adjustment Programs (CAAPs), which threaten access to medications for patients like her because they don’t allow copay assistance to count toward patients’ deductibles. She has battled against CAAPs herself and is now encouraging legislators to restrict their use in insurance benefit programs.
In 2021, Darla joined the board of Patients Rising, and she is currently taking the Patients Rising Advocacy Master Class to help make her an even more effective patient advocate. She wants to use her patient experience and knowledge to help others with rare and chronic diseases.
With over two decades of experience in regulatory compliance, in the energy and environmental industries, Darla leads Noble Grace, which helps this crucial part of the economy operate in a safe and responsible manner.
Darla holds a Master of Science in Hazardous Waste and Environmental Management from Southern Methodist University in Dallas, Texas. Darla has worked with over 120 energy companies located throughout the United States and Canada.
Darla has served on the Board of Directors for the American Public Gas Association and has served as Chairman to the Marketing and Communications committee for the Texas Gas Association, where her contributions earned her a personal achievement award in 2006 – 2007. Darla also served on the Board of Directors for the National Association of Women Business Owners Dallas – Ft. Worth chapter, served as the Director of Public Policy and earned the Rising Star award in 2011.
Khrystal joined the rare disease community in 2011 when her newborn son, Hunter, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the leading genetic cause of mortality in children under the age of two. In May of 2016, Khrystal advocated alongside the FAST Movement (Families for the Acceleration of Spinal Muscular Atrophy Treatments) in a meeting with top FDA representatives for access to Spinraza, an SMA treatment in clinical trials at the time. Together with other FAST members, she asked the FDA to stop placebo trials, provide a means of access for the weakest SMA patients, accelerate the approval, and approve the treatment for all SMA patients regardless of age or type of SMA. In an interim look completed on August 1, 2016, the FDA found the treatment met trial objectives. An Expanded Access Program for SMA Type 1 patients commenced August 12, 2016, and the FDA approved Spinraza for children and adults with SMA on December 23, 2016.
Khrystal is committed to improving health outcomes in those with rare diseases through improved access to rare disease diagnoses and treatments. She advocates for whole genome sequencing of newborns, the expansion of newborn screening programs, insurance policies that conform to FDA labels for orphan drugs, and clinical trials and real-world evidence that include endpoints and data points that are meaningful to patients and caregivers. She is a proponent of patient-driven access to rare disease treatments. Khrystal holds a Juris Doctorate from Stetson University College of Law and is certified in Clinical Trial Design and Interpretation by Johns Hopkins University and Drug Discovery by University of California San Diego through the Coursera program.
Nichole is a Board Certified Patient Advocate (BCPA), public health professional, and health policy and legislation advocate. She serves as Founder, President, and Chief Advocate of Wayfinder Patient Advocates, LLC. Nichole graduated from Cleveland State University with a Bachelor of Science in Health Sciences, a minor in Biology, and undergraduate certifications in public management and bioethics. She completed post-graduate bioethics studies at Yale University and graduate public health leadership training at the University of North Carolina Chapel Hill. Nichole is currently pursuing a Masters in Public Health (MPH) with a concentration in Community Health from Baylor University and is passionate about patient-centered, participatory healthcare. Of the Patient Advocate Certification Board’s (PACB) growing list of Board Certified Patient Advocates globally, Nichole is believed to be the youngest advocate to have achieved the prestigious credential to date.
Nichole is actively involved with the National Patient Advocate Foundation (NPAF), Patients Rising!, and the Alliance of Professional Health Advocates (APHA). She works to educate local and national government officials on patient-centered care by means of policy and legislation. In addition, Nichole has served on the Board of Directors of the Student National Medical Association (SNMA), the Young Non-profit Professionals Network(YNPN) Cleveland Chapter and a steering committee member of both the Cleveland Clinic’s Group of Aspiring Leaders (GOAL) and the Cleveland Clinic Neurological Institute’s Our Voice: Healthcare Partners. She has also served as National Chair of the Minority Association of Pre-medical Students (MAPS).
Nichole has been recognized as a trailblazer in the integration of best clinical research practice and sustainable continuous improvement in Multiple Sclerosis (MS) at the Cleveland Clinic and honored for her contributions to the field by Crain’s Cleveland Business as an honoree in their “Twenty in Their Twenties” Class of 2021.
Misdiagnosed until the age of 12, Nichole has battled chronic pain and understands the weight and frustration of feeling like a by-standard in your own clinical care but not knowing where to turn to first. Her mission is to empower patients and help them find their voice in conversations regarding their health.
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.
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.
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.
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.
With over 40 years professional experience in healthcare and clinical research as a backdrop, Debbie shifted easily into care navigation and patient advocacy. She is a champion for including the patient voice in assisted living/nursing home environments where her mother resides and supports her husband as a loving member of his heart failure care team. She resides in the Greater Philadelphia area and is a Pennsylvania delegate for Patients Rising.
Jenn McNary is a trusted voice in the rare disease community, as a mother, public speaker and fierce advocate. Her work in the rare disease space as a thought leader earned her the Ryan’s Quest Ryan’s Hero award in 2013, a nomination for the Global Genes Champion of Hope award in 2014, and the prestigious 2017 Meyer-Whalley instrument of change award.
Formerly as the director of outreach and advocacy at a Massachusetts-based non-profit foundation, she was responsible for the organization of the largest FDA advisory committee hearing in history, with over 1000 Duchenne advocates, families, clinicians and researchers in attendance. There are currently only three drugs approved for Duchenne, Exondys51, Vyondys53 and Emflaza, though in various roles, Jenn was involved in the approval process for all three. Jenn has unique experience in the drug development field, as a parent of children enrolled in the clinical trials, an advocate engaging with the regulators and as a consultant helping to develop programming for patients.
Currently, Jenn is consulting in the biotechnology space with an expertise in caregiver/patient engagement, including bringing the patient voice to drug development and solving barriers to access. Her other activities include serving as the Founder of One Rare, a non-profit formed to meet the needs of young adults with rare and chronic conditions and raising her four children in Massachusetts.
Jody is a patient advocate for psoriasis and psoriatic arthritis. She volunteers with several non-profit organizations raising awareness of psoriatic diseases. She advocates on Capitol Hill, at the Massachusetts State House and meets with elected officials frequently to educate and promote research for psoriatic disease, improve the quality of life for patients, and advance legislation that improves access to treatments and health care providers.
Jody has been interviewed and quoted by numerous health publications and wrote an op-ed in support of step therapy legislation in Massachusetts that was published locally and online. She also recorded a public service announcement about psoriasis on the local cable tv network and was the guest on her local representative’s cable tv show to talk about being a patient advocate.
Jody was awarded the Volunteer Innovator Award by the National Psoriasis Foundation for her work in getting several landmark buildings in Boston lit up for psoriatic disease awareness, writing a resolution adopted by the Massachusetts Senate for psoriasis awareness and attending the Massachusetts Citizens Legislature Seminar run by the Massachusetts Senate at the recommendation of her senator.
Jody was diagnosed with mild psoriasis and moderate to severe psoriatic arthritis in 2004 after several years suffering and misdiagnosis and she tells her story to help promote awareness and understanding of the disease. She is a lifelong resident of Massachusetts and currently lives in Plymouth.
Beverly Tayler, R.N.
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.
Nisha lives in South San Francisco, CA and works at mbaMission, a leading professional MBA admissions consulting firm, guiding applicants to top business schools in the U.S. and abroad in building their personal brands by identifying and showcasing the strongest aspects of their candidacy in their applications. Her BA in Communication from the University of Pennsylvania and deep interest in understanding the consumer inspired her to initially pursue a career in marketing research, which led her to positions at Time Inc., Rosetta, and KPMG LLP in New York City. After getting her MBA from the University of Michigan Ross School of Business, Nisha worked for several years in brand management in San Francisco at Big Heart Pet Brands (now part of The J.M. Smucker Company).
For the last couple of years, Nisha has been a patient advocate for the rare disease community, raising public awareness of the genetic skin disorder Epidermolysis Bullosa. Through the EveryLife Foundation’s Rare Disease Week on Capitol Hill and Rare Across America events, she has shared her story with members of Congress to encourage them to support policies that benefit rare disease patients. Previously, she spent six years on the board of directors of The Shanti Project, a San Francisco–based nonprofit that enhances the health, quality of life, and well-being of people with serious illnesses.
I am a wife, mother and grandmother who has been living with Psoriasis and Psoriatic Arthritis for years now. I am an Advocate for others as well as an Advocate for myself. I am very much involved in every aspect of my own health.