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Founded by a patient, lead by patients and caregivers

We are patient-strong

 

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 her full story here

Dr. Ken Culver

Director of Research & 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

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.

Ken has published 2 books and more than 100 scientific articles.

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.


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, CAREGIVER

I am a caregiver to my husband, Carl, who was diagnosed in 2017 at 33. I am also a mother, student, and small business owner. I hold a BA in Communication & Media Studies and an MSc in Political Science.

Patrizia Saccenti

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

J.T. Hedges

I’m an ALK+ cancer survivor, diagnosed at 37 years old. My amazing wife and I have three daughters and we reside in York, PA. I work in the Health Care industry as a member of an executive team leading Physician practices. I’m an automobile enthusiast, enjoy home remodeling, and spending time with my family and friends. I’m active with fundraising for cancer research through my family’s charitable foundation.

jeffrey sturm

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

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).

Summer Farmen

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.

Marc Muskavitch

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.

Yvonne Diaz

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 organisations strengthen brands, drive business goals and support reputations. I live in London, in the UK, with my husband, twin teenage sons and dog.

Thomas Carroll

Chairman Emeritus

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.

 
 

Our Story

WE ARE A PATIENT-DRIVEN GROUP, PROVIDING SUPPORT, EMPATHY & RESEARCH FUNDING TO CHANGE THE FUTURE for ALK-POSITIVE LUNG CANCER patients.


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.