Meet the REACH Community Leaders
People with cystic fibrosis are engaged as community scientists informing every step of REACH through a Community Advisory Board (CAB) and a Social Engagement Advisory Board (SEAB).
Jesus Chavez
Los Angeles, CA SEAB
Hey there! I’m Jesus Chavez, and I’ve got a story that’s fueled by determination and hope. Diagnosed with cystic fibrosis at birth, I’ve faced my share of challenges, but my journey took a pivotal turn in May 2016 when I lost my brother to CF. That loss ignited a fire in me to make a difference!
I’m on a mission to raise awareness and give back to the incredible Cystic Fibrosis Foundation. Every day I get to breathe, I celebrate life and cherish every moment watching my little girl grow. I’m in this fight with all my heart, and together, we will make CF stand for “Cure Found!” Let's do this!
Julie Diroll
Clevland, OH, CAB
I'm 35 years old and have a degree in Hospitality Management from Kent State University. My career took me into casino administration for seven years. When I'm not tending to my CF, I enjoy taking walks in the metroparks with my husband and dog, Nala, paper crafting, cooking, and reading. This is my first time in an advisory role rather than as a study participant.
Samantha Ferry
Los Angeles, CA, CAB
Cystic Fibrosis is all I have ever known. It made me who I am today, and that is part of the reason why I want to do anything I can, no matter how big or small, to contribute to finding the cure for Cystic Fibrosis. The REACH study does just that, so let’s keep beating the odds one breath at a time!
Glen Griessler
Warrenville, IL, CAB
At the age of 66 yrs old I count myself as a lucky, and certainly blessed CF patient, to still be here today. As a DD- 508 patient my life has been full of health hardships but also much joy along the way. My wife of 35 years, along with my two stepsons and their families, including 4 grandchildren, are a bright light in my life. My hobbies are fishing, metal detecting, bike riding and working on my cars. Over my lifetime I’ve been very involved in drug studies for CF. For me it has always felt good to take part and do what I can for the greater good of all CF patients.
Steph Hansen
San Antonio, TX SEAB
I am a patient advocate and speaker from South Texas. I serve on the CFF Adult Advisory Council and the CFF Financial Wellness Advisory Committee. I have a passion for bringing awareness to CF in diverse populations, as well as CF patients who cannot currently benefit from CFTR modulator therapy.
Nicholas Kelly
Clevland, OH, SEAB
My approach to life is filled with compassion, artistry, knowledge and a deep-rooted desire to do good in the world. Diagnosed at three-months-old with cystic fibrosis by my mother, I never let my condition prevent me from pursuing a “normal” life. I earned a Bachelor’s and Master’s Degree from Bowling Green State University, after which I became, a dietitian. I am an author, poet, educator, dancer, and decorated speaker. I am an advocate for the CF and chronic disease community.
For more information about me, visit: www.NicholasKellyRD.com
Shelby Luebbert, CPhT
At. Louis, MO, SEAB
As my health declined, I shifted life to a different focus… to fight back the best way I could while living with two rare-er mutations, by advocating. I have been a patient insight advisor on both local and national CFF committees, lending personal life experience and aiding in the development of the ever-changing research landscape of CF with a patient-focused lens to give transparency to researchers. Most recently, I’ve been a member of the Genetic Therapies Working Group as an insight member with a focus on Community and Care Center Education, and became a member of the Adult Advisory Council.
Dr. Alexandra “Xan” Nowakowski
Lakeland, FL, SEAB
I am an Associate Professor in Geriatrics and Behavioral Sciences and Social Medicine at the Florida State University College of Medicine. My research, teaching, and outreach focus on health equity in aging with chronic disease. I hold a PhD and MS in Medical Sociology from Florida State University, an MPH in Health Systems and Policy from Rutgers University, and a BA in Political Science from Columbia University. I bring lessons learned from my own lived experience with cystic fibrosis and complex post-traumatic stress disorder. In the CF community specifically, I serve as a volunteer advocate, professional mentor, and research consultant. In these roles they draw on their own experiences as a member of the 10% of people with CF currently ineligible for CFTR protein modulator drugs.
