JEANIE HANLEY – PRESIDENT
I’m over 50 years old and have been involved with this outstanding organization since 2007. I was diagnosed at 33 years of age after many years of CF-like symptoms treated as “refractory asthma.” Uncovering the diagnosis at such a late age was a huge relief knowing that I would receive the proper care, treatment and support services. I have written several articles already for CF Roundtable, infusing medical knowledge into them from my 20 plus years as a physician. Also, with another Director, Andrea Eisenmann, we conduct interviews of adults with CF for CF Roundtable’s “In The Spotlight” column. I also run a non-profit Patient Advocacy Service, called Planning Health, free to anyone who desires greater understanding of their illness, diagnosis, treatment, medications and/or any other aspect of their health.
MERANDA HONAKER – VICE-PRESIDENT
Greetings USACFA and CF Roundtable readers! My name is Meranda Honaker (age 32), and I live in the beautiful state of North Carolina. I am a recipient of the Boomer Esiason College Scholarship, and I earned my Associate of Arts from the University of Phoenix. I have been reading CF Roundtable for over a decade, I was elected as a board director in 2013 and I am now honored to be Vice President of this wonderful organization. Learning as much as possible about CF has been a priority for me since I was 17 years old. In my quest to learn more about CF I have been fortunate enough to befriend many people who have CF, their families and medical providers. This has been a large motivator in my efforts to not only learn more about CF, but also dedicate much of my time to CF-related nonprofit work. I am a firm believer in patient compliance with all CF-related therapies (airway clearance, nebs, exercise, etc.) coupled with self-education regarding CF. Moreover, patient advocacy is an essential skill that each CF patient and caregiver must learn to master. Proper patient advocacy can save your life, and I hope to further spread this message to the CF community. On a personal note, I most enjoy spending time with my loved ones, frequenting the beautiful beaches of N.C., studying psychology and cheering on my favorite ACC basketball team, the Carolina Tar Heels. I look forward to working with my fellow USACFA Directors as Vice President and continuing to contribute to CF Roundtable in the coming year.
JENNIFER WEBER – SECRETARY
Hi! I’m Jen Weber, and I am a 42-year-old CF adult (diagnosed at age two) who has learned a lot about fighting CF through the experience of two lung transplants, two years apart – in 2010 and 2012. Along with the associated complications of adult CF, I learned to manage adulthood and college life, obtaining my BS in Sociology from Bradley University, and my JD from Indiana University School of Law – Bloomington, IN. I’ve spent most of my professional life practicing law, where I have been employed by the State of Indiana for 13 years. In my spare time I am a cellist in our local symphony orchestra and other community groups.
I have actively volunteered for the local CF Foundation since I moved to Indiana in 2000, and recently joined the Board in 2015. I also enjoy volunteering for our local Indiana Donor Network to raise awareness about organ and tissue donation. In my daily life I am responsible for Wally and Lily – my furry little felines, and exercising, always a priority! I also always make time for friends and family – preferably if we are getting ready to travel somewhere! I look forward to contributing to CF Roundtable and working with USACFA
STEPHANIE RATH – TREASURER
Hi! My name is Stephanie Devine Rath. I’m one of the newbies to the USACFA board. I’m really excited to be part of this organization. I’ve been reading CF Roundtable for more years than I can remember and it has always been a source of inspiration and good information.
I was diagnosed with CF at age 19 via genetic testing. Sweat chloride tests prior to that age were inconclusive. I was almost transplanted at age 23 but was able to rehabilitate myself via exercise and strict adherence to therapies. Currently I’m 43 years old and loving every minute. It’s not always been easy but most of my life has been a wonderful adventure. My husband Randy & I love to travel, see live music, and enjoy time at home with our Boston Terriers, Rocky & Rosie. I also enjoy yoga, gardening, good food and I am learning to sew.
In the last few years my health has declined. I retired from my position as Tax Manager for Ernst & Young in 2009. Since then I’ve been through one transplant workup and treatment for rectal cancer. I will be eligible for transplant again in the fall of this year. Currently things are stable and I’m on oxygen only at night and with exercise. My determination and a positive attitude have helped me through the many challenges of CF and I hope to be overcoming them for many years to come. I stay involved in the CF community locally and online. For the last 14 years, I’ve chaired the Festiv-ale Beer tasting for the Indiana CF Foundation chapter. I speak at that event and whenever needed to help spread the word about CF. My other interests include sharing my experiences via blogging, CF web forums, and Facebook groups. I’m honored to be selected to serve on the board and have the opportunity to be even more involved in the CF community.
ANDREA EISENMAN – EXECUTIVE EDITOR/WEBMASTER
Diagnosed with CF at the age of 9 months, I am now 52. I joined USACFA in the fall of 2002, two years after my bilateral lung transplant. At that time, my doctors and I realized I could not go back to work and take care of my health needs, so I stayed on disability. But I had wanted to keep busy and feel useful so I volunteered to use my skills to produce CF Roundtable on my computer. About a year later, having redesigned the newsletter and working with other board members, I designed the USACFA website as well.When not occupied with USACFA duties, I volunteer at the New York Organ Donor Network. Volunteering there involves various tasks that build awareness of organ and tissue donation. My transplant has made a huge difference in the quality of my life; I was able to compete in three Transplant Games and to get married in September 2008. I celebrated my 16th anniversary post-transplant in April, 2016.
MARK LEVINE – SUBSCRIPTION MANAGER
Hello, my name is Mark Levine. I am 43 years old and was diagnosed with CF at the age of 2. I have worked with the Cystic Fibrosis Foundation for many years in four different states and I’m very excited to be a part of USACFA. I grew up in Connecticut with my younger brother, David, who also was born with CF. After graduating high school, I attended Lehigh University in Bethlehem, PA, and graduated with a BS and MS in Mechanical Engineering. It was in PA where I became more active in CF activities; joining a support group and volunteering for the Foundation. While in college, my brother David received a lung transplant at the age of 18. He passed away just three years later after suffering from rejection.
Immediately after finishing school, I moved to Michigan to start a career with Chrysler, where I have been employed for 19 years. A nine year relocation to Indiana to work in manufacturing introduced me to the Indiana Chapter of CFF where I became very active. I was a bachelor in a CF auction and later served as chairman of the auction, which is Indiana’s largest CF fundraiser. I was a founder and chairman of the Kokomo, IN, Great Strides Walk and have spoken to dozens of audiences at CF fundraisers throughout Indiana and Michigan. Before moving from Indiana to Michigan in 2006, I met my wife, Joelle. With my two step-children, Brooke (18) and Adam (16), Joelle and I now reside in West Bloomfield, Michigan. I like to play tennis and ping pong, workout and stay in touch with friends. I continue to be very excited to be a part of USACFA.
ELLA BALASA – DIRECTOR
Greetings to my fellow CF Roundtable readers! I am 24 years old, born and raised in Richmond, Virginia, where I currently reside. I was diagnosed with CF at 18 months old. I am first generation Hungarian and proudly speak the Hungarian language and plan to visit Hungary again in the next year. I have two older siblings and I am an aunt of three. I am the only one in my entire, extended family to have CF. I graduated from Virginia Commonwealth University with a Bachelor’s degree in Biology in December 2014. I currently work part time as a lab manager in an environmental microbiology laboratory at the university. Working with pseudomonas and other familiar CF microbes in the environmental setting is fascinating as these organisms that unfortunately live in our lungs, are ubiquitous throughout the environment. Within the past few years, I have become increasingly interested in being involved in the CF community by contributing as well as hearing others’ ideas, tips, and personal stories about living with CF. I have a very good doctor to patient relationship with my adult CF care team in Richmond, and I have been followed by the Duke Transplant center for the past few years, as I have lung function in the 30% range. Through their help, along with my very supportive family, I am fortunate to have accomplished as much as I have. I want to help educate and provide support to others that face the same challenges in fighting this disease. In addition to my daily health maintenance routine, I love to spend time outdoors in the summer months at the James River in Richmond or go on day beach trips to Virginia Beach. I also travel as much as I can, and hopefully the next stop will be around Eastern Europe. I look forward to contributing to CF Roundtable and being a part of this great organization.
REID D’AMICO – DIRECTOR
My name is Reid D’Amico, and I am excited to be a Director of this great organization. I was born outside of Washington, DC but spent the majority of my childhood in Hilton Head Island, SC. After being diagnosed with CF at the age of 10, I have been fascinated with medical research. I attended Duke University in Durham, NC and developed this passion by majoring in Biomedical Engineering. The majority of my undergraduate research focused on stem cells, tissue engineering, and regenerative medicine. I graduated from Duke in May of 2015, and immediately started my PhD in Biomedical Engineering at Vanderbilt University in Nashville, TN. My research focuses on using my engineering background to model, treat, and understand rare lung diseases like CF. Starting in June of 2016, I was awarded the National Science Foundation Graduate Research Fellowship. I was a recipient of the Cystic Fibrosis Scholarship Foundation, and Boomer Esiason Scholarships. I also have a column “CF and Regenerative Medicine” with BioNews Services. I am grateful of all of these opportunities, and am looking forward to influencing the CF community by contributing to CF Roundtable and working with USACFA.
LAUREN JONES HUNSAKER – DIRECTOR
Hello! My name is Lauren Jones Hunsaker and I’m 30 and have cystic fibrosis. I also have cystic fibrosis-related diabetes, chronic kidney disease and am partially blind in my left eye as a result of diabetes. I grew up in Houston, Texas and was diagnosed with CF when I was six months old. My family was heavily involved in the CF Foundation when I was young and I served as poster child for the Gulf Coast Chapter of the CF Foundation for three years. Prior to its closure following implementation of cross-infection precautions, I attended CF camp where I met other patients with my disease. For a time, nearly all of my friends had CF and those friendships were among the most impactful relationships I’ve ever had. As a practical result of cross-infection safeguards, CF can be an isolating disease and our community has to find unique ways to stay involved and connected. I’m immensely proud to serve as a director for USACFA. CF Roundtable provides a vital outlet through which the CF community can engage and share experiences with each other concerning all challenges of the disease—medical, social, professional and financial.
I received a B.A. from the University of Pennsylvania and a J.D. from the University of Texas School of Law. For the past five years, I’ve practiced law in Texas. My first two years as a lawyer were spent at the law firm of Sufian & Passamano, LLP, where I provided advice to and represented people with CF in the areas of disability and health insurance benefits, employment and education. Beginning in 2013, I worked for a real estate firm and specialized in commercial real estate transactions. I recently retired from law, due to health, and now work remotely as a copywriter for a marketing company. I married my law school sweetheart and we live in Houston with our two dogs—a King Charles Cavalier named Shelby and a Lhasa Apso named Max.
LAURA MENTCH – DIRECTOR
I was diagnosed (finally!) with CF in 2003, the month I turned 50. After a lifetime of health issues I am grateful to be able to be in the care of health care providers who know how to help me. While looking for information about living with cystic fibrosis, I found CF Roundtable and a connection with other adults with CF. Reading the experiences of others has given me so much help and encouragement. My work has been in sexual health education and I have been fortunate to work with people of all ages in community and school settings. I am happy to bring my experience to the CF community and provide education about sexual health and adult diagnosis of cystic fibrosis. Of the five children in my family, I am the youngest and the only one with CF. The older kids used to tell me that Mom and Dad ran out of the good genes before I was born! Michael Brody and I have been married since 1976. We started our journey together in Massachusetts and now live in Bozeman, Montana. He is a professor of education at Montana State University. We are the parents of Adam, Luke and Cara and grandparents to Arlo and Teddy. I feel fortunate to have a family. With gratitude for all of the adults who have helped me, I join the dedicated Board of Directors who bring you CF Roundtable, which is full of valuable information and resources. Please contact me by email at: firstname.lastname@example.org.
BRENNEN REEVES – DIRECTOR
Hi folks, my name is Brennen and I’m 25 years old. I was born and raised on Hilton Head Island, SC, alongside my brother and my mom and dad. Just eight weeks after being born I was diagnosed with cystic fibrosis and 19 years later I received a bilateral lung transplant at Duke University in 2011.
After overcoming my medical obstacles, I received a scholarship to attend the College of Charleston, where I majored in Theatre Performance. Since my graduation in 2014, I have spent much of my time performing my one-man show, titled “BREATHE. A TRUE STORY”, which I wrote and created. The show, named one of the top five shows of Charleston’s 2015 Piccolo Spoleto Festival, tells the story of my experiences with cystic fibrosis and recalls my life-saving surgery and my outlook moving forward.
I continue to perform in Charleston, regionally, and at various venues around the country in addition to working as a comedian, writer and public speaker. This past year, I was honored, being named among Charleston’s Best and Brightest, a designation awarded to young professionals in the low-country who excel in leadership, charity and career achievements. I’m hoping to continue my studies through a creative writing graduate program this coming fall. I currently reside in Charleston, SC. Links to my pages and sites: brennenreeves.com; facebook.com/reevesbrennen/
JEANNINE RICCI – DIRECTOR
Hello. My name is Jeannine Ricci. I’m 45 years old and was diagnosed with CF at the age of 7. My exposure to the medical field during my childhood inspired me to pursue a career in nursing. I landed my dream job and worked on the pediatric oncology unit at The Children’s Hospital of Philadelphia for seven years. The lessons I learned while helping these courageous children and their families battle cancer were invaluable and I carry them with me throughout my life. With the birth of my first daughter, I decided to stop working and focus all of my energy on motherhood and staying as healthy as possible. I’m savoring every moment with my two girls, ages 13 and 15.
I did eventually return to the field of nursing, but on a part-time basis and currently work per diem as a school nurse. I’ve been involved with the Cystic Fibrosis Foundation (CFF) for about 20 years as a Great Strides team leader. Our team has raised over $100,000 through the years. I’m currently working with the CFF by sharing my experiences and ideas in an effort to raise awareness of clinical trials. I’m a strong supporter of the concept of participatory medicine and believe that patients should be viewed as equal partners in their healthcare.
Education, connection and communication are key components to helping patients feel empowered to advocate for themselves and CF Roundtable is the perfect tool toward this goal. I remember receiving my first CF Roundtable newsletter about 15 years ago. I read it cover to cover and then over again, not realizing until that moment just how much I craved connection with others with CF. I’ve learned so much from CF Roundtable over the years and am excited to now be able to give back and share some of my knowledge and experiences.
On a more personal note, I live in New Jersey with my husband and two daughters. I love being outdoors enjoying nature, whether it be hiking in a national park or walking my dog, Buddy, at our neighborhood park. I enjoy traveling, photography and spending time with friends and family. I look forward being a part of this wonderful organization.
BETH SUFIAN – DIRECTOR
I am 46 years old and have been an active volunteer with USACFA for over 15 years, including writing a column about legal issues for CF Roundtable. I’m an attorney who focuses my practice on helping people with CF with insurance Social Security and other benefit issues. I am also director of the CF Legal Information Hotline and Director of the CF Social Security Project.