CF Roundtable Speakers Bureau

The Board of Directors of US Cystic Fibrosis Association is proud to support a Speakers Bureau, bringing the voices and personal perspectives of adults living with CF to the CF community including fundraisers, education days, conferences and other events.

USACFA will cover all expenses of providing speakers for your event.

We look forward to helping you find a speaker for your event. Contact Reid D’Amico, rdamico@ usacfa.org or Laura Mentch, lmentch@usacfa.org.

Information about each speaker and the topics they’ll present is provided in the  Summary List below with more detailed information further on.

Summary List of Speakers and Topics

Reid D’Amico, PhD Candidate

  • CF as an Identity – Living With CF
  • Patient Advocacy – CF Research and Clinical Trials

Ella Balasa

  • Traveling with CF – Self-Advocacy for CF
  • Mental Health and Well-being with CF – Challenges of living with CF
  • Living a Happy and Fulfilled Life with CF
  • Importance of Support of Family and Friends for Persons with CF

Jeanie Hanley, M.D. 

  • Advocating for Yourself and Others
  • Being Diagnosed with CF as an Adult

Mark Levine

  • Working full time with CF – Raising a family while having CF
  • Traveling with CF – Balancing School, Work and CF
  • Motivation for getting involved and fundraising
  • Staying active and working out with CF
  • Relationships with Doctors and Care Facilities

Laura Mentch, Ed.M.

  • Adult Diagnosis of CF – Sexual Health and CF
  • Talking with Children about Sexuality

 Brennen Reeves

  • Mental Health – Transplant
  • Organ Donors

 Isabel Stenzel Byrnes, LCSW, MPH

  • Living with CF – Mental Health
  • Challenges of CF – Traveling with CF
  • Family and CF – Success and CF
  • Sexuality and CF – Patient Advocacy
  • Education and CF – Choosing Careers
  • Balancing School, Work and CF – Employment and CF
  • Health Care and CF – Relationships
  • Transplant and Organ Donation – Exercise and CF
  • Relationships with Doctors and Care Facilities

 Beth Sufian, J.D.

  • Success and CF – Patient Advocacy
  • Education – Choosing Careers
  • Balancing School, Work and CF – Employment and CF
  • Health Care and CF – Legal Issues with CF
  • Social Security and CF

Speakers

Reid D’Amico, PhD Candidate

Reid D’Amico, PhD Candidate
CF as an Identity
Living With CF
Patient Advocacy
CF Research and Clinical Trials

Reid is a scientist with CF who also serves as a director for the US Adult CF Association (USACFA). After completing his undergrad at Duke University,  Reid started his PhD in Biomedical Engineering at Vanderbilt University. As a fellow with the National Science Foundation, Reid researches the intersection of engineering and pulmonary systems to create more biomimetic platforms to study rare lung diseases. His passion for science and engineering stems from his experiences with CF. He believes his journey with CF has shaped much of his career, advocacy, and personal life.

Outside of science, Reid works with politicians on The Hill and in his current state of Tennessee. His mission is to ensure that the voices of those with CF and other rare diseases are taken into consideration when making policy decisions. Reid has also worked with the FDA to expedite the approval process of potentially life-extending CF medications.  Reid also serves on the Protocol Review Committee and Editorial Review Board at the CF Foundation.

 

Ella Balasa

Ella Balasa
Traveling with CF
Self-Advocacy for CF
Living a Happy and Fulfilled Life with CF
Mental Health and Well-being with CF
Challenges of living with CF
Importance of Support of Family and Friends for Persons with CF

My name is Ella Balasa and I am 25 years old, born and raised in Richmond, Virginia, where I currently reside. I was diagnosed with CF at 18 months old. I have two older siblings and I’m 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 laboratory 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 an excellent 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 below 30% FEV. I have found that self-advocacy and good communication is vital in receiving optimal care for CF. Through the help of my CF team, along with my very supportive family and friends, 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. I also take pleasure in cooking, spending time with friends, and publishing blog posts and articles on personal topics both related and unrelated to having CF. I also travel as much as I can. Italy and Greece are my next stops. Ultimately, my goal is to not only live a fulfilled life but to show others that many things are possible, we just have to try it and believe.

Jeanie Hanley, M.D.

Jeanie Hanley, M.D.
Advocating for Yourself and Others
Being Diagnosed with CF as an Adult

Jeanie is a physician with CF and is honored to be President of the US Adult CF Association (USACFA) that publishes CF Roundtable. She has been married for over 30 years and has three healthy children. Three of her nine siblings also have CF. Although she and her siblings had severe respiratory and digestive issues at a young age, they were not diagnosed until 1995 when genetic testing became available. Jeanie was 33 years old at the time and had just given birth to her third child.

As an allergist and asthma specialist, she started the first Breathmobile Program in 1995 at University of Southern California. The program is a comprehensive, mobile allergy and asthma program treating medically underserved children at their schools in Los Angeles. During the ensuing years, she oversaw the expansion of the Breathmobile program nationally. For her efforts she was honored as Physician of the Year by the Allergy and Asthma Foundation of America. As a physician and patient, she recognized that many patients and their families lacked access to many medical resources, reliable information and advocacy. To fill this need, she founded a nonprofit patient advocacy organization called Planning Health to help patients suffering from any illness to navigate their health care journeys with medical knowledge and proper resources.

She has spread the word regarding how best to advocate for yourself and others through CF Roundtable and Planning Health. Jeanie hopes to continue this work in the CF community.

Mark Levine

Mark Levine
Working full time with CF
Raising a family while having CF
Traveling with CF
Balancing School, Work and CF
Motivation for getting involved and fundraising
Staying active and working out with CF
Relationships with Doctors and Care Facilities

Mark, 47 years old, is a husband, stepfather, tennis player, traveler and full-time engineer with Fiat Chrysler Automobiles (FCA). Diagnosed with cystic fibrosis at the age of two, Mark grew up watching his younger brother, David, struggle and ultimately lose his battle with CF at the age of 21. After graduating with a bachelor’s and master’s degree in mechanical engineering from Lehigh University, Mark became very involved with the CF Foundation, speaking and fundraising in Michigan and Indiana including chairing the highly successful Guys and Dolls Auction in Indianapolis. He is currently on the board of directors for USACFA, the organization that publishes the CF Roundtable and annually is a top fundraiser for Great Strides and Cycle for Life. Married for fourteen years, Mark has two step-children, Brooke who just graduated from Northwestern University at the age of 22 and Adam, 20, who will be a junior at Tulane University. Mark has been working at Chrysler (now FCA) for over 23 years and is currently a Chief Engineer for Automatic Transmissions. He works out every morning, plays tennis at least once a week and enjoys biking and hiking. Mark and his wife Joelle, a mental health therapist, love to travel and recently returned from a vacation in Spain.

Laura Mentch, Ed.M.

Laura Mentch, Ed.M.
Adult Diagnosis of CF
Sexual Health and CF
Talking with Children about Sexuality

Laura Mentch, was diagnosed with CF in 2003, the month she turned 50.  Looking for information about living with Cystic Fibrosis, she found CF Roundtable and a connection with other adults with CF. Laura is a health educator and has worked in many settings providing sexual health care and education and is happy to share her knowledge and experience with the CF community. With gratitude for all of the adults who have helped her, she joins the dedicated Board of Directors that brings you valuable information and resources with CF Roundtable.

Laura is the youngest of 5 children and the only one with CF. She lives in Bozeman, Montana with her husband. Together they are the parents of three adult children and two grandchildren.

Brennen Reeves

Brennen Reeves
Mental Health
Transplant
Organ Donors

Hi folks, my name is Brennen and I’m 26 years old. I was born and raised on Hilton Head Island, SC, alongside my brother, 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 regionally, and at various venues around the country in addition to working as a comedian, writer and public speaker. Over the 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, too have travelled and continued on with my show, having taken it up to Chicago, down to Florida, and up along the northeast. I am still continuing my studies through a creative writing graduate program where I hope to earn an MFA in nonfiction and poetry. I currently reside in Savannah, GA. Within the coming year or two I hope to have published a book of poetry while writing a memoir. Links to my pages and sites: brennenreeves.comfacebook.com/reevesbrennen/

Isabel Stenzel Byrnes, LCSW, MPH

Isabel Stenzel Byrnes, LCSW, MPH
Living with CF
Mental Health
Challenges of CF
Traveling with CF
Family and CF
Success and CF
Sexuality and CF
Patient Advocacy
Education and CF
Choosing Careers
Balancing School, Work and CF
Employment and CF
Health Care and CF
Relationships
Relationships with Doctors and Care Facilities
Transplant  and Organ Donation
Exercise and CF

Isabel is a bereavement social worker at Mission Hospice, where she counsels and leads writing groups for those who are grieving. She has lived with cystic fibrosis for 45 years and received a double lung transplant 13 years ago. Isabel has been an active leader for CFRI and organ transplant organizations for over two decades. Isabel and her late twin Anabel published the memoir, “The Power of Two,” and served as international patient advocates in her mother’s country, Japan, which led to the creation of a documentary film of the same title. Isabel has lectured around the country on topics such as living well with illness, grief and loss, end-of-life issues and organ donation, including a TEDx Stanford talk in 2014. Isabel plays the bagpipes to celebrate her lung donor. She lives in Redwood City and is married to Andrew Byrnes.

Beth Sufian, J.D.

Beth Sufian, J.D.
Success and CF
Patient Advocacy
Education
Choosing Careers
Balancing School, Work and CF
Employment and CF
Health Care and CF
Legal Issues with CF
Social Security and CF

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.