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.
BETH SUFIAN – VICE PRESIDENT
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.
SYDNA MARSHALL – SECRETARY
Hey ya’ll! My name is Sydna Marshall. I’m 36 years old and was diagnosed with CF at 11 when my adenoids were removed due to continual sinus and allergy problems. I am born and bred in Austin, Texas. I obtained my bachelor’s degree in biology from The University of Texas at Austin, in December 2001. For the last 20 years, I worked in various capacities, including Marketing Assistant, for a boutique civil litigation law firm in downtown Austin. I recently retired for health reasons. In addition to CF, I’m also managing Graves disease, osteopenia and chronic sinusitis. I should be crowned the queen of CF sinus complications as I’ve had five-plus sinus surgeries, including a frontal obliteration.
I discovered yoga over a decade ago when I first read an article that Hatha yoga practiced two to three times weekly can increase breathing capacity by 70 percent. I haven’t always had the chance to be consistent with my asana practice due to hospitalizations and surgeries. However, the breath work, self-acceptance and self-awareness inherent in any yoga practice have been life-saving tools in handling the many CF challenges with resilience and grace.
I’ve met many people with CF, CF caregivers, doctors and more in my journey with CF. I endeavor to find the silver lining with each obstacle, with the hopes that younger people with CF will discover that CF doesn’t define you as a person. Each of us is dealt our own deck of cards, some easier than others to manage. The key is recognizing that most of life is how we respond to the deck of cards we’re given.
I met and married my best friend and love of my life, Adam, while working at the law office. We have one loyal, feisty fur-baby boxer-mix named Husker (this Texan bleeds Nebraska red). Music is a huge part of our lives together and we love the variety of live music around Austin and the surrounding hill country. On any given day you can find us spending time with family and taking in as much as possible. I’ve yet to meet a coffee shop or bookstore that I didn’t adore from the moment I entered. I love the twinkly lights at Christmas as they elucidate not only the joy of the season, but the stillness of the moment. I love capturing the divine magic in that moment on camera. When I’m not staring at the lights around me, reading, on my mat, listening to music or spreading CF awareness, you can find me in the kitchen. Whole Foods is one of my happy places. Food, music, and a good book will always nourish my soul.
ANDREA EISENMAN – EXECUTIVE EDITOR/WEBMASTER
Diagnosed with CF at the age of 9 months, I am now 53. 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 17th anniversary post-transplant in April, 2017.
LISE COURTNEY D’AMICO – SUBSCRIPTION MANAGER
Hi! My name is Lise Courtney D’Amico. I am excited to be a member of the USACFA board. I love reading CF Roundtable because I always gain so much knowledge from its pages. It is truly an honor to be able now to contribute to the publication myself.
I am 23 years old and I was diagnosed with cystic fibrosis at the age of 2. I have an older brother and a two year old nephew, both of whom do not have CF. I grew up in the Washington DC metro area, which is where I currently live. After graduating from high school, I attended Boston College (BC), where I studied math and economics. I graduated from BC in May, 2016 with a degree in math and economics. Now I work as an economic consultant working on antitrust and competition cases.
I have been blessed with fairly stable health throughout my life. I strongly believe in exercise as a form of airway clearance, so when I am not at work you can usually find me at the gym trying to clear my lungs. I also enjoy trying new restaurants, cooking, and attending Orioles and Capitals games. In addition, I am involved with the CF Foundation and host several fundraisers a year. This year I am even training for the CF Foundation’s Xtreme Hike in September.
I am so excited to be part of the USACFA board and I cannot wait to get to know the CF community even more.
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.
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.
JESSIKA BIELE – DIRECTOR
I am 32 years alive and absolutely ecstatic to be able to contribute to the mission of the USACFA. I have grown up watching the CF community drastically change for the better and I am excited to finally be a part of that change. I was diagnosed with CF at the age of 4 and at the age of 13 I was diagnosed with CF-related diabetes. I have been through major ups and major downs in terms of my CF, but have found that mindful and positive thinking, in association with friends and family, exercise, healthy eating, and staying organized, keep me grounded in mediocrity in an otherwise chaotic world. I have learned to embrace both.
I am currently a freelance ghostwriter specializing in self-care, relationships, health and wellness, personal finance, motivation, and organizational happiness. I am also a professional editor and copywriter. I have loved and continue to love being a ghostwriter mostly because of the flexibility and the varying nature of the work. I have a bachelor’s degree in accounting, am currently pursuing a master’s in organizational leadership, and plan on directly pursuing a PhD in organizational psychology. While my current academic background aids in my current career, there are plans on implementing my knowledge into the CF community.
I live on the east coast of Florida in a small beach town on a barrier island with my SO, Paul, and our new puppy, Bhodi. Paul is a recreational surfer, so we chase the swell around the world (thanks honey). He surfs and I beach. We just adopted Bhodi, an American Bulldog, Great Dane mix from a rescue down in Key Largo, FL that is currently being trained to be my diabetes medical alert dog. I love a good book, a good movie, good music, good food, and a good cup of coffee. I live for the sun, the sand, and the ocean. I am an artist, I absolutely love to cook, I am a bit obsessed with health & wellness, cleaning in therapeutic for me, my favorite kind of sushi is tuna, I love talking to strangers, bullet journaling has been a blessing to my productivity, and I probably do drink way too much coffee. email@example.com
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
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.
RACHEL STEINMAN – DIRECTOR
Hi! My name is Rachel Steinman, I’m 29 years old, and I’m super excited to be a member of the USACFA board.
I was diagnosed with CF at the age of 16 and have been very fortunate to have had fairly stable health throughout my life thus far.
No matter one’s level of health, USACFA is an important outlet for our community. CF is a complicated disease and it effects every patient in a unique way. For me, having an online community has helped me both learn more about my disease and feel less isolated in the process.
I graduated from the University of Miami with degrees in Journalism and Sociology in 2009 and I spent a year volunteering with Americorps shortly after. A few years into my career I decided to quit my job and move to Tel Aviv, Israel, for a change of lifestyle and a marketing position with a tech company. I moved back home to NY after a year to be close to my family.
I grew up on Long Island and currently reside in NYC with my boyfriend where I continue to work in digital marketing. I enjoy cooking, traveling with my boyfriend and spending time with friends and family.
I believe I’ve been able to maintain good health with the help of amazing doctors, a positive attitude, lots of acupuncture and cupping therapy and a very loving, supportive family.
AMY SYLVIS – DIRECTOR
Hello! My name is Amy Sylvis and I am so grateful to be a member of the USACFA board. I have been an avid reader of CF Roundtable since the late ’90s and I am forever grateful for how much I have learned over the past two decades from the publication. I fiercely believe that all people with cystic fibrosis should have access to the best care and latest knowledge – and I’m thrilled to be able to contribute to this prestigious organization. My specific passions include hemoptysis, aspergillus, CFRD and decreasing quality of treatment variation across CF centers in the United States.
I am 36 years old. I was diagnosed at 6 months old. I earned my Bachelor of Science in Business and Bachelor of Arts in International Relations from the University of Southern California as well as my Masters in Business Administration from USC. I have worked full time, mostly in biotech and pharma, which continues to be my passion despite my health forcing me to leave work in 2017. In my spare time you can find me reading non-fiction, watching college football and traveling. My husband and I were married in August 2017 and we live in Los Angeles, CA, with our little cocker spaniel/dachshund mix.