We interviewed Dr. Sydney Barned - a medical doctor, ALK patient, and very active lung cancer advocate. We learned about her personal journey with ALK+ lung cancer, how lung cancer has also affected other members of her family, and, more importantly, her tireless involvement in lung cancer advocacy, some of which has already resulted in legislation being passed to help lung cancer patients
Read MoreWhen we decided to interview Summer Hall Farmen about her personal journey (that includes being a mom to an adult son with severe cerebral palsy), her journey with ALK-Positive lung cancer, as well as her active involvement in our organization (Board member, ALKtALK Healing Arts program, fundraising, and Summit Committees, to name a few), we didn’t realize we were in for another treat. Summer’s interview didn’t just give us a good glimpse of her own life. It also helped us get to know another prominent ALK member whose life is tightly connected with Summer’s life - her father and active member of the ALK Positive Medical Committee, Ray Hall. As we got to hear and learn more about this father-daughter duo and their partnership to give Summer the longest and best life possible as an ALK patient, we were reminded of the values of family, commitment, perseverance, dedication, and above all – love.
Read MoreThis comforting soup makes a delicious and savory soup that’s perfect for those cold busy nights in the Fall and Winter when butternut squash is also in season.
*feel free to substitute sweet pork sausage in this recipe if spicy isn’t your thing!
One pot - 30 minutes start to finish!
One of the challenges in our community has been the treatment of earlier stages of ALK-positive lung cancer, including stages IA through 3A. Historically, we've faced a lack of definitive guidelines for addressing the illness that represents 30-40% of the total ALK lung cancer population. Patients in these stages are traditionally treated with surgical tumor removal, followed by platinum chemotherapy. This treatment is a "one size fits all" approach to earlier stage lung cancer, without concern for the presence of the ALK mutation.
Read MoreThere was an excellent Q&A session with Dr. Schenk and Dr. Camidge at the 2022 ALK Summit in Denver. Colin Barton, (Member of our Medical Committee), has graciously taken the time to list the questions and times on the video recording that is available on our ALK Positive Youtube Channel.
Read MoreI love a bolognese sauce. It is generally an Italian meat sauce made with ground beef and pork, often even a bit of pancetta. I have made this slow simmered authentic bolognese substituting ground turkey for the beef and pork and it doesn’t miss a beat, its just healthier for you!
If you love an Italian inspired dish, this sauce will be one of your favorites. Great for pasta, lasagna, or even over zucchini noodles. Make extra. It freezes beautifully.
Read MoreALK Positive Europe (APEU) was founded in 2022 and has its origin in a Facebook group of European patient advocates who were supported in the beginnings by Gina Hollenbeck.
In Europe, there are several patient organizations and groups that advocate for ALK-positive patients limited to their own countries.
The size of these associations and groups varies greatly from country to country - from 25 to over 550 members.
Read MoreWe interviewed Ashley Sitorius, mother and caregiver of 11-year-old Deliah, who was diagnosed with ALK-positive brain cancer when she was just 7. ALK can actually appear in many pediatric cancers as a driver mutation. Among many things, we discussed Deliah’s (and the family’s) journey in navigating this devastating diagnosis, how she has been able to advocate for Deliah’s treatments (some of them not officially approved for pediatric cancer), and her future hopes for pediatric ALK cancer.
Read MoreThe spectrum of ALK-positive cancer knows no age limits. Meet the faces of courage: the ordinary individuals with the ALK-positive mutation. This mutation, notorious for lung cancer in adults, defies the stereotype. At just 52 years old, these fighters, who are usually non-smokers, shatter expectations. Yet, it doesn’t stop there – the youngest warriors, too, bear the burden of ALK-positive mutations. While a handful of kids battle ALK-positive lung cancer, an even greater number grapple with foes like lymphoma, sarcoma, and brain cancer, all stemming from the ALK-positive mutation.
Read MoreThis is my favorite Southern Beach Bake (even though I'm from the North). I’ve prepared this it for clients and family alike. It's great for the warm weather of summer, and it feeds a crowd. Cover the entire table with butcher paper or newspaper, set out some rolls of paper towels, some fun hot sauces, and mustards, some bowls for shells, and leave the utensils in their drawer. For this recipe we let everyone eat with their hands!
Read MoreThe ALK Positive NSCLC Research Acceleration Committee (RAC) systematically reaches out to selected biotech companies with NSCLC treatments in development and/or trial. In February of 2022, RAC member Ray Hall (father to patient Summer Farmen) wrote a letter to the CEO of Memgen Inc., introducing us and asking for a get-acquainted Zoom meeting, which occurred shortly thereafter. CEO Greg Brown, MD, MBA, and Chief Scientific Officer Mark Cantwell, PhD let us know that they were initiating a clinical trial at Duke and Moffit Cancer Centers for their oncolytic virus drug MEM-288 for patients with solid tumors
Read MoreBoth Dan (the ALK patient) and Brittany (the spouse-caregiver) are actively involved in ALK Positive and are also this year’s ALK Summit Chairs coordinating our Summit in their home city of Philadelphia, Pensylvannia. We interviewed them both about their background, their life with ALK, and about how their volunteer activity has enriched their lives.
Read MoreALK Positive and the Lung Cancer Research Foundation (LCRF) are pleased to announce a groundbreaking research partnership to fund $2 million in ALK-positive lung cancer research over the next three years.
Read MoreThe University of Michigan Judith Tam ALK Lung Cancer Research Initiative is recruiting ALK positive NSCLC patients for extensive and sustained studies of the course of each individual’s disease. Their research is enabled by the continuing donation of patients’ blood samples, tumor tissue samples, and/or malignant fluids, as each may be available over time for individual patients. The following steps are required for a patient to participate in the study.
Read MoreThe decision to enroll in a clinical trial requires a real understanding of what is being studied and how you will participate in the study. It is important to remember that clinical trials have been instrumental in developing all treatments for ALK-positive cancers. Many of our longest survivors have participated in clinical trials of treatments that are now the standard of care.
Read MoreThis delicious marinated skewered chicken and vegetables is SO easy to throw together. I call it a non-recipe recipe, since anyone can do this!! Just leave yourself a few hours to marinate all the components. The longer they marinate, the better they are!
Read MoreLong-term ALK patient and founder of the ALKtALK program that has become a wonderful resource bringing the ALK community closer. Marc lives with his wife Carolyn in West Bloomfield, MI. His cancer life started in 2013 when he was diagnosed with Stage 3b Hodgkin’s Lymphoma. He went through 6 months of chemotherapy until he started coughing up blood 7 months later after his last Hodgkin’s treatment. Thats when he was diagnosed with Stage 4 ALK Positive Lung Cancer in November 2013.
Read MoreIn only seven months as our Director of Research and Clinical Affairs, Dr. Ken Culver has made a tremendous impact with our organization. With over three decades of work in pediatrics, immunology, pharmaceutical drug development for cancer treatment, as well as laboratory research in 1990 that contributed to the first ever human gene therapy trial for the treatment of children with adenosine deaminase (ADA) deficiency. It's an inspiring interview with Ken - and we are fortunate to have him with us in a leadership position. Be Inspired!
Read MoreAs part of the ALK Positive mission statement the ALK Positive Inc Board of Directors is committed to assisting ALK patients worldwide. Whilst there are many international members in the independent ALK FB SG, we are also greatly encouraged by the numerous international patients and caregivers who have subscribed to our newsletter.
Read MoreThe University of Michigan Judith Tam ALK Lung Cancer Research Initiative is recruiting ALK positive NSCLC patients for extensive and sustained studies of the course of each individual’s disease. Their research is enabled by the continuing donation of patients’ blood samples, tumor tissue samples, and/or malignant fluid as each may be available over time for individual patients.
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