We are patient strong
We are a patient-driven community dedicated to supporting, empathizing with, and funding research that shapes a better future for ALK-positive lung cancer patients.
Founded by a patient, led by patients and care-partners
ALK Positive consists of 3,000+ ALK-positive lung cancer patients and their caregivers in 55+ countries. Through our foundational online support group, we are able to support each other worldwide and share information to become empowered patients-advocates.
We believe in taking control of your own heath and future. We directly support high-impact research that improves patient outcomes and has the potential to transform ALK-positive lung cancer into a chronic (and maybe someday, cured) condition.
We seek to partner with entities who are furthering ALK-positive lung cancer research and treatment options. Please contact us if you are a potential partner.
Merita Carroll
Founder, passed 2018
ALK Positive was created by Merita Carroll in 2015. She wanted a support community where ALK-positive lung cancer patients, like herself, and caregivers could share their personal experience with this condition.
Merita was a vibrant healthy young woman working as a registered nurse when diagnosed Stage IV. She was diagnosed on March 6, 2015 and, sadly, passed away on April 24, 2018.
READ MERITA’S STORY (PDF)
Dr. Ken Culver
Director of Research and Clinical Affairs
Dr. Culver graduated from the University of Iowa College of Medicine in 1981. He completed his internship and residency in Pediatrics and a fellowship in Pediatric immunology at the University of California, San Francisco. At UCSF, he developed a passion for finding new treatments for patients with incurable diseases. He is board certified in Pediatrics and in Allergy and Immunology
Read more about Dr. Ken Culver
Next, he went to the National Institutes of Health in Bethesda, Maryland as a Medical Staff Fellow and later as a Senior Clinical Investigator. He worked in the laboratory of Dr. Michael Blaese. In collaboration with French Anderson, they initiated the first approved human gene therapy experiment. Dr. Culver infused genetically-modified T-cells into Ashanti DeSilva on September 14, 1990. A second child was treated in 1991. Subsequently he co-led the first gene therapy clinical experiment for the treatment of glioblastoma multiforme.
Dr. Culver worked for 20 years at Novartis Oncology where he contributed to the development of 12 compounds including ceritinib for ALK+ NSCLC. In his last role, he served as Head, US Thoracic Oncology Clinical Strategy and Lead for the Center of Excellence for Immuno-Oncology for US Clinical Development and Medical Affairs. Most recently, he was the Global Medical Affairs Leader for the Cell and Gene Oncology program at GlaxoSmithKline.
Outside of his medical career, Dr. Culver co-founded in 2002 the Foundation for Peace, a non-profit focused on education, medical care and community development for the materially impoverished in the Dominican Republic, Haiti and Kenya. Thousands of people have volunteered, and many more have been served over the past 20 years.
Ken has published 2 books and more than 100 scientific articles.
Sadia Yaakov
Medical Team Project Manager
We are excited to welcome Dr. Sadia Yaakov as Medical Team Project Manager. She has over 20 years of oncology experience in the clinical research industry and healthcare. Sadia holds a Doctor of Science in Health Systems Administration from Massachusetts College of Pharmacy and Health Sciences. She holds a Bachelor of Science in Health Sciences with a minor in Statistics and a Master of Science in Pharmacy Administration from the University of the Sciences in Philadelphia.
Read more about Sadia Yaakov
Prior to joining ALK Positive, Sadia worked for a number of organizations including Merus N.V., Puretech Health, InClin, Inc., Sarah Cannon, Alaunos Therapeutics, Theradex, Jeanes Hospital, and Kindred Hospital. Sadia has managed phase I, II, and III global clinical trials, including melanoma, breast cancer, ovarian cancer, lung cancer, glioblastoma, sickle cell anemia, and x-linked hypophosphatemia. Sadia’s experience is underpinned by her profound commitment to drive innovation and facilitate transformative breakthroughs in oncology for patients across the globe.
Katie Delaney
Philanthropy Manager
Katie brings over 10 years of business entrepreneurship and client relationship management experience to her role as Philanthropy Manager at ALK Positive Inc. She leads teams and projects in partnership with Board and executive leadership to advance philanthropic campaigns and initiatives that include donor acquisition, stewardship and communication.
Read more about Katie Delaney
Katie’s personalized approach to philanthropy creates a meaningful experience for patients, families, supporters and partners.
She earned her Associate of Science degree from North Idaho College and lives in Spokane, WA where she enjoys the little things like local farmers markets, pottery and painting, and a home filled with love and laughter.
Our Board of Directors
ALK Positive is a 501(c)(3) non-profit organization founded in 2017 as the advocacy arm of the ALK Positive Support group. The organization is led by our Board of Directors.
Kirk Smith
President, Patient
Diagnosed December of 2013, I am living with Stage IV lung cancer. My wonderful wife, Jayne, and I live Athens, GA. with our dog, Maximus. I am a runner and mountain biker who is thankful that the incredible advances in lung cancer treatment allow me to still do what I love. LIVE!
Nancee Pronsati
Vice President, Patient
I’m a Colorado native who’s had Stage IV lung cancer since 2016. More importantly I’m a wife, Mom and friend. My professional background includes leadership positions in HR, Finance and Operations, primarily in the software industry and I got my MBA along the way. My husband and I love to travel, spend time with our kids and laugh with friends.
Christina Weber
Secretary, Care-partner
I am a caregiver to my husband, Carl, who was diagnosed in 2017 at age 33. I am also a mother, student, & small business owner. I hold a BA in Communication & Media Studies and an MSc in Political Science.
Patrizia Saccenti
Care-partner
I’m caregiver to my husband Paolo, diagnosed in 2017. We live in Rome and have 3 awesome kids: Clara 12, Ernesto 10, and Edoardo 7.
I’m a retired thoracic surgeon and a psychotherapist (Jungian School of Rome).
Teresa Wiant
Legal Chair
I was busy living my life in the Pacific Northwest in 2016 when a bad cough led to a stage 3B lung cancer diagnosis. I celebrated with a Mutation Party when genomic testing showed ALK Positive because I understood that I might have more treatment options if my cancer is driven by a single mutation. I went through concurrent chemo and radiation in hopes of curing the disease. In 2018, I progressed to stage 4 and started targeted therapy. It is a privilege to serve on this Board because I want more time for all who are living with this disease.
Jeffrey Sturm
Patient
Jeffrey Sturm, earned his MBA in International Business at University of California, Berkeley. Retired in in 2012 and diagnosed in 2014 with ALK+ NSCLC, Jeff participated in the original Alectinib clinical trial, and is currently doing well on Lorlatinib, while volunteering with two of the ALK Positive medical committees. For thirty years Jeff managed a technology equipment finance company in Silicon Valley with specialties in Biotech and Semiconductors.
Greg Wehn
Patient
Diagnosed the week of my 40th birthday (Sept 2021), I live unapologetically with Stage IV lung cancer. I am a husband, dog dad, Crossfitter, and enjoy being outside/active as often as I can in the New England region (USA). I’m grateful for the treatment options available to ALK+ patients and the time it has given me to spend with those I love and cherish and want to continue supporting the trend of longer survival for patients.
Duncan Preece
Patient
Diagnosed August 2018, I am still on my first TKI. Married with three children, I live with my adorable wife and caregiver Linda in Montreal. I have lived mainly in the UK, Switzerland and Canada. A semi-retired health care professional, with a post-grad in clinical oncology, as well as a diploma in HR, an MSc and an MBA, I worked mainly for one of Europe’s top Academic University Hospitals, and also for the management consultants Ernst&Young (EY).
Amanda Bialack-Stewart
Patient
I was diagnosed in October 2022, 10 days after giving birth to my twin boys. Prior to diagnosis I was a runner & in above average health working out 6 days a week and into my 8th month of pregnancy. I have had a career in real estate since 2010, and have continued to work since my diagnosis. I enjoy traveling, making memories with my friends and family and giving back within the ALK Community.
Summer Farmen
Patient
I am a wife to an adored husband and mother to three amazing children. I have a MS in Education and work with the birth to three year old population as a developmental specialist. I also happen to have stage IV lung cancer, diagnosed June 2020, on my 21st wedding anniversary. Soon after diagnosis I attended an ALK+ Art Therapy class on Zoom, found my people and decided to take an active role in giving back. The future is bright for ALK Positive, Inc. I am so grateful to those who paved the way and so honored to be a part of this organization as it moves forward.
Yvonne Diaz
Patient
In August 2021, I was diagnosed with stage IV, ALK-positive lung cancer. Prior to this time, I had always been healthy and blissfully unaware that anyone could get lung cancer. My professional background is in communications, and over the past 30 years I’ve helped global organizations strengthen brands, drive business goals and support reputations. I live in London, in the UK, with my husband, twin teenage sons and dog.
Marc Muskavitch
Patient
Diagnosed in June 2020, I have worked for 30 years as a university professor, followed by 10 years in pharma and biotech. I hope to draw on my knowledge of genetics and biochemistry, and experience in education and administration, to help improve therapies and outcomes for those living with ALK+ cancer.
John O’Sullivan
Patient
live in Cape Elizabeth, Maine with my amazing wife, Nancy. Together, we raised six wonderful children. I earned a BS in Civil Engineering from the University of Maine and an MBA from Northeastern University. For the past 30 years, I’ve worked with a variety of companies as CFO, COO and/or President. I was diagnosed with Stage IV lung cancer in November 2017. Thanks to advances in ALK targeted medicines, I have been able to continue working. And more importantly, spending time with my family and two dogs, and enjoying the outdoors.
Thomas Carroll
Chairman Emeritus & Patient
As the Co-Founder of the ALK Positive Support Group and ALK Positive, Inc., Tom was the Chief Administrator and Manager of the Support Group for his late wife and Founder, Merita Carroll. In 2017 Tom joined with other Support Group members to create what is now ALK Positive, Incorporated. His guidance and leadership set the foundation in honor of his wife to ensure her legacy remains for years to come until a cure is found for ALK-positive lung cancer. Tom was appointed to the position of Chairman Emeritus in honor of his devoted work to provide Information, Support, and Empathy on a Worldwide basis. Tom remains active in a financial and supporting role to both ALK Positive, Inc. and the Support Group.