 LAURA TILLMAN – PRESIDENT I was diagnosed with cystic fibrosis in 1995 at the age of 47. I’m 63 years old and have been married to Lew for over 35 years. We have no children of our own but have 5 godchildren ranging in age from 10 to 34. We do, however, have a one-and-a-half year old fur-kid. Kirby is a Golden Retriever who came to us under highly unusual circumstances (all good). He provides us with love, laughter, and constant wonder regarding his energy level and curiosity. We also are the godparents of a Golden Retriever who stays with us when her parents are out of town.I worked as a school psychologist but took early retirement in 2000 due to constant infections acquired from working with infants, toddlers, preschoolers, elementary, middle school, and autistic children.Since then I have been involved in volunteer work with the Michigan Humane Society, the Cystic Fibrosis Foundation, USACFA, a Michigan-based CF organization, a medical school program (Family Centered Experience) that pairs patients with first and second year students in a mentoring role as to what it’s like to live with a chronic illness, a Patient and Family Advisory committee at my hospital, as well as weekly volunteer work at my local library. I write the “Info from the Internet” column for CF Roundtable as well as the “What’s New” column for CFRI. I have been on the board of directors of USACFA since 2003, and I am currently serving as the President.My passions include animals, traveling, and reading. I also enjoy attending musicals and dance performances, Pilates exercise, walking, remodeling/decorating our house, baking, and socializing! Email: ltillman@usacfa.org |
 CYNTHIA DUNAFON – DIRECTOR I was diagnosed with cystic fibrosis at 12 years of age and celebrated my 47th birthday this year. Currently living in Chicago, I divide my time between working on a graduate degree in the humanities, teaching part-time, and staying healthy. I enjoy spending time with my husband, Steven, as well as reading voraciously, swimming, and folding origami.In recent years, I have become increasingly active in the CF community. Having participated in several clinical trials, I am also a member of the planning committee for the Chicago CF Awareness Day (which has been held over 25 years now!), and I help maintain their website. I am part of a CFF-sponsored task force dedicated to improving the quality of care in CF clinics nationwide. Finally, I have been a member of the USACFA Board of Directors since 2003, and I serve in the position of vice president. Email: cdunafon@usacfa.org |
 BETH SUFIAN – DIRECTOR I am a partner in the law firm of Sufian & Passamano in Houston,Texas. My professional and personal experience have instilled a unique understanding of the law and the importance of being able to advocate for yourself or a family member with CF. I’ve been able to assist people with CF and their families across the country with various legal matters such as Social Security benefits and insurance problems.Now 45, I was diagnosed with cystic fibrosis at age 9. I have been married for 23 years and have a ten-year-old daughter. I cherish the many friends I have who also have CF, many of whom I have met through my work with CF Roundtable. Email: bsufian@usacfa.org |
 COLLEEN ADAMSON – TREASURER Now 42, I was diagnosed with CF when I was 13 months old. My mother, recognizing the classic symptoms of the disease (failure to thrive, always sick, etc.) insisted I be tested for CF. (Doctors had been reluctant to do so since the disease “didn’t run” in my family.)In 1991, I earned a Bachelor of Science degree in Applied Mathematics from Union College in Schenectady, NY. Then the next year, I received a Master of Science degree in Operations Research from the College of William and Mary in Williamsburg, VA . I work full time as an Operations Research Analyst for the U.S. Government, and I have been married to Scott Adamson for 14 years.On 3 July 1998, I had a bilateral lung transplant at Fairfax Hospital in Virginia, becoming the first CF patient to be transplanted there. A Director of USACFA since 2000, I am a mentor for the Fairfax Hospital Lung Transplant program, as well as a member of the Washington Regional Transplant Community (WRTC) speaker’s bureau. Email: cadamson@usacfa.org |
 ANDREA EISENMAN – EXECUTIVE EDITOR/WEBMASTER Diagnosed with CF at the age of 9 months, I am now 46. 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 10th anniversary post-transplant in April, 2010. Email: aeisenman@usacfa.org |
 DEBBIE AJINI – DIRECTOR My name is Debbie Ajini and I was diagnosed with CF at 2 months old in 1970. Over the years I have had my share of ups and downs including having B.cepacia, using a feeding tube, going on oxygen and experiencing a massive bout of hemoptysis.I am currently a pre-transplant candidate at the University of Pittsburgh Medical Center, which has a great reputation. I am very pleased they have agreed to take me on as a patient despite my having cepacia. Right now my support team and I are focused on fundraising for transplant costs and at the same time trying to keep me as healthy as possible for as long as possible.Since 1995, I have been married to Louie, a great husband and partner. We have gone through the ups and downs of CF together, and we have still managed to travel a lot. We had a wonderful dog for 12 years, and we continue to look for fun things to do together (next up is a painting class!). He is definitely a key reason I continue to do as well as I do and move forward each day.I have been on the board of USACFA for over 5 years now and I really enjoy it. My column “Deep Breath In” helps me continually focus on the here and now. I love that CF Roundtable, our newsletter, is run by adults, all with CF. I think that helps us stay focused on the topics that are relevant to our readers. I am so glad that with everything else going on, I am still able to be a part of this great organization. Email: dajini@usacfa.org |
 PAUL FELD – VICE PRESIDENT I was honored to be elected to the Board of Directors of USACFA in 2001. Diagnosed with CF around the age of 19, I am 54 years old. I am married to Kristi, who also is my best friend, and our honeymoon is now in its 20th year. I have an adopted daughter, Sarah, who is 30. Currently employed by Parc Provence working part-time, post-retirement, I was formerly employed by BJC HealthCare in St Louis, where I worked for 23 years. I managed about 35 wonderful people who care for the computer systems that document our patient visits. I enjoy writing, golfing, and volunteering. Finally, BJC’s HealthCare system’s largest hospital, Barnes-Jewish, is the tops in lung transplantation, having performed over 1100 of them since its program inception. I’m happy to say I was #765, receiving my wonderful, new lungs 10/23/04 from a donor named David. I’m one of those miracle people who got a fresh start in life around 50 years old. I was fortunate to have served as President of USACFA from 2005-2009. Email: pfeld@usacfa.org |
 JEN EISENMANN – SECRETARY I was born in the middle of a blizzard in New York City on New Year’s Day 1971. Diagnosed with CF at the age of one, I remained an only child. At age 2, I moved with my parents to Connecticut where I graduated from high school. I decided I wanted to be more independent and get away from the cold weather, so I applied to, and got accepted into, Furman University, a small college in South Carolina. In 1992, I graduated with a degree in Religion and Psychology. After taking a three-month training course in Colorado, I became a youth minister at an Episcopal church outside of Lansing, Michigan, where I lived for six years. It was there, when I was in my early twenties, that CF really began to affect my life greatly and I started to take my care seriously. In 1999, I moved back south to Aiken, South Carolina and became an accounting assistant at Dogwood Stable, Inc. Unfortunately, I had to retire to take better care of my health in 2005. In an interesting twist of fate, the company downsized in 2010 and I now work there again, just two afternoons a week, in the same position I previously held.In 2001, I married my wonderful husband Pete, who is a Leasing Agent with a popular local real estate company. He took up running a few years ago and uses his races to raise money for CF. We live with our two crazy dogs, Cinnamon and Lily.I have helped raise my amazing stepchildren, Jason, who was 14 in 2001, and Jessie, then 11. Now 25, Jason served in the Marines for four years and currently lives and works in Aiken. Jessie, now 22, is finishing up a 6 month volunteer job at an orphanage outside of Rio de Janiero. She will soon return to the states and open a yoga studio in New York City.I have a zany sense of humor and enjoy listening to music of all types, crocheting, and hanging out with my friends at the local brew-pub. Pete and I are heavily involved with an annual CF fundraiser in Columbia, SC. Email: jeisenmann@usacfa.org |
 JEANIE HANLEY – DIRECTOR Hello Readers! I’ve been asked to introduce myself, and include what you should know about me. Something you may not realize is, I almost ran over Dustin Hoffman in Beverly Hills (Sorry, Dustin). Thankfully, the job description of Director does not require driving. Actually I’m a pretty good driver, but I live in Los Angeles, so that may have to be put in perspective. I’ve only had one ticket in the last 10 years, if you must know.But seriously folks, you probably want to know what I can do for you. I have written several articles for CF Roundtable, interspersing a little of my medical knowledge as a physician for 20 years into them. I will continue to do that, as long as I don’t run out of ideas (or run over them, whichever comes first). Learning about the latest CF research and advocating for my fellow CFers are also other passions that I hope will be translated to improved medical information and care for you.What else can I do for you? I will laugh at all of your jokes, even if I’ve heard them already. Why? Because I love to laugh. Sometimes, much to the chagrin of my children, I will even laugh at my own jokes, but there are some people who tell me it’s endearing… Regardless, it’s good for my lungs and for yours too. So let’s laugh together!Lastly, you should know that I have nine siblings; against the Mendelian genetic odds, four of us were blessed with CF – all diagnosed as adults. I was 33 years old and already a doctor at diagnosis. Although I initially became a doctor to help find a diagnosis and cure for my sister who was the sickest, it soon became apparent that I needed to find a diagnosis and cure for myself too. Even though my siblings and I had symptoms for many, many years, none of us had elevated sweat chlorides. When genetic testing became available, I finally was able to prove that we had CF.Unfortunately, my sister passed away nine years later, and my lofty goal of curing her could not be met. Because of the giving person that she was, I don’t doubt that she is orchestrating, somehow, from her heavenly position, along with other CFers who have passed, the incredible research in progress such as VX-809, Miglustat and many others.Many thanks to the Board for electing me. It is quite an honor to be part of this outstanding organization. I look forward to working together and hearing from you. Please contact me anytime for more information, to tell me a joke or just to say hello. Peace and Love to you all. Email: jhanley@usacfa.org |
 MARK LEVINE – DIRECTOR Mark Levine, 41, is the newest board member of USACFA. Diagnosed with CF at the age of 2, he has worked with the Cystic Fibrosis Foundation for many years in four different states. Mark grew up in Connecticut with his brother, David, who also was born with CF and their parents, Jane and Len. Mark attended Lehigh University in Bethlehem, PA, graduating with a BS and MS in Mechanical Engineering. It was in PA where Mark became more active in CF activities; joining a support group and volunteering for the Foundation. While Mark was in college, David, at the age of 18, received a lung transplant. He passed away just three years later after suffering from rejection. Immediately after finishing school, Mark moved to Michigan to start a career with Chrysler, where he has been employed for 17 years. A nine year relocation to Indiana to work in manufacturing introduced Mark to the Indiana Chapter of CFF where he became very active. He was a bachelor in a CF auction and later served as chairman of the auction, which is Indiana’s largest CF fundraiser. He was a founder and chairman of the Kokomo, IN, Great Strides Walk and has spoken to dozens of audiences at CF fundraisers throughout Indiana and Michigan. Before moving back to Michigan in 2006, Mark met his wife, Joelle, in Indiana. With their two children, Brooke (16) and Adam (14), Mark and Joelle now reside in West Bloomfield, Michigan, where Mark also serves on the CF Foundation Board of Directors. Mark is excited to be a part of USACFA. Email: mlevine@usacfa.org |
 KATHY RUSSELL – DIRECTOR I was diagnosed with CF in 1956, when I was 12. Now I am 67. Since 1965, I have been married to Paul, and we have no children. I was employed as a hospital nurse until I was 31, when I had to stop working because I kept getting ill from bacteria at the job. Since retiring I have spent much of my time in volunteer efforts. I helped to organize USACFA in 1990 and have been an officer or director since the beginning. Currently, I write a column (Speeding Past 50) for our newsletter, CF Roundtable. Email: krussell@usacfa.org |
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