Introducing ALK Positive Denmark An interview with President, Irfan Gilani
EDITORS NOTE: ALK Positive, Inc. is starting a new section in our newsletter to feature international (non-US) ALK patient groups/organizations. If you would like your group/organization to be featured in a future newsletter, please contact Duncan Preece at duncan.preece@alkpositive.org.
If you are an organizer/leader/advocate/ranking member of a non-US ALK patient group or nonprofit and think you would benefit from some guidance on how you can grow your organization and become better known in your country or region, we are happy to help. Please reach out to Duncan Preece at duncan.preece@alkpositive.org to discuss your specific needs.
For our first international section, we chose to introduce ALK Positive Denmark and interviewed the organization’s President, Irfan Gilani.
Can you share with our readers the founding story of ALK Positive Denmark? What inspired the establishment of the organization?
ALK Positive Denmark, founded on October 6, 2022, stands as a dedicated advocacy group for ALK-positive lung cancer patients and their families. The genesis of this initiative can be traced back to Heidi Vaarbjerg, who recognized the need for a support network for Danish patients facing ALK-positive lung cancer.
The pivotal moment in the formation of ALK Positive Denmark occurred during a meeting organized by Jan Vestergaard and the late Lars Erik Larsen with Dr. Peter Meldgaard, a renowned Danish oncologist and ALK expert, and his protégé Maiken Parm Ulhøi at Aarhus University Hospital in May 2022. Despite widespread support and valuable suggestions for a patient advocacy group, a noticeable gap existed in finding individuals willing to assume responsibility, except Louise Valentin. Together, they diligently laid the groundwork for the association.
Several future founding members, including Jan and Lars, attended the meeting. My personal commitment to this cause emerged when my wife received a diagnosis of ALK-positive NSCLC in August 2022. In my quest for information on research and advocacy, I reached out to ALK Positive Inc., and they facilitated my connection with Heidi and Louise. Extending my support, we collaboratively founded ALK Positive Denmark on October 6. Therefore, it would be remiss not to acknowledge ALK Positive Inc.'s role in paving the way and, to a certain extent, inspiring the establishment of ALK Positive Denmark.
ALK Positive Denmark seems to have a unique focus. As the President of ALK Positive Denmark, could you elaborate on the core values that drive ALK Positive Denmark, and how do these values shape the organization's initiatives?
From the outset, ALK Positive Denmark has been resolute in its mission. At our core, we are driven by an unwavering commitment to instill genuine hope within ALK-positive lung cancer patients and their caregivers. Our primary mission is ambitious - seeking a cure for this condition or, minimally, transforming it into a manageable chronic state. This commitment forms the bedrock of our organization, defining our immediate and long-term goals.
In the short term, we ardently advocate for the rights of ALK-positive lung cancer patients in Denmark. This involves championing optimal treatment methods and ensuring timely access to cutting-edge medicines and revolutionary therapies. Our focus is not just on medical intervention but on fostering an environment that empowers patients and their families.
While our immediate goal is to champion the rights of ALK-positive lung cancer patients in Denmark, our broader vision transcends national boundaries.
The crux of our mission is to assume a pivotal role in driving forward research and fostering international collaboration in the realm of ALK-positive lung cancer. We firmly believe that genuine progress and groundbreaking advancements necessitate dedicated research initiatives.
To achieve this, active engagement with academia, the biotech, and pharmaceutical sectors is crucial. We aim to elicit their collective efforts to navigate the dynamic landscape of ALK-positive lung cancer. By doing so, we envision contributing to the development of innovative treatments that have the potential to save lives.
In essence, the core values of hope, advocacy, and collaboration propel our mission, shaping ALK Positive Denmark into a dynamic force dedicated to transforming the landscape of ALK-positive lung cancer on both national and international fronts.
In terms of accomplishments, could you highlight some key milestones that ALK Positive Denmark has achieved since its inception? How has the organization evolved over time?
It all happened so fast it is almost a blur! The establishment of our advocacy platform stands out as a remarkable achievement, reflecting the culmination of significant efforts in both legal structuring and the development of a professional culture. This accomplishment positions us as a reliable voice for ALK-positive lung cancer patients and their families in Denmark.
Building on this foundation, our active collaborations with leading medical professionals, including esteemed oncologists and researchers, have not only strengthened our knowledge base but also positioned ALK Positive Denmark as a key player in ALK-positive lung cancer research. The collaborative spirit we've fostered is anticipated to contribute to the development of innovative treatment approaches, ultimately enhancing patient outcomes.
In terms of influencing positive changes in healthcare, we've successfully raised awareness about ALK-positive lung cancer, particularly considering Denmark's relatively small number of annual diagnoses. The challenges arising from the rapid evolution in personalized medicine and the nuanced treatment methodology for ALK-positive lung cancer prompted us to challenge existing perceptions. For instance, our comparative analyses on ALK patient survival rates in Denmark has initiated discussions on the optimal utilization of treatment methods and improvements in patient quality of life.
Empowering patients to engage in discussions about treatment options with their oncologists and advocating for the importance of LCT, re-biopsy, and timely brain scans are immediate impacts we've made in the healthcare landscape.
Within just six months of our founding, our vision for personalized medicine received significant recognition when the Danish Cancer Society invited us to become an affiliate organization. This milestone not only instigated a paradigm shift toward precision medicine within the society but also marked our distinction as the first-ever sub-group to join the Danish Cancer Society's network. These achievements underscore our commitment to advancing ALK-positive lung cancer treatment and research.
Personally, I take a lot of pride in the establishment of our international medical advisory board with renowned ALK experts, which, although not yet active, represents a crucial asset in achieving our objectives.
In terms of organizational evolution, ALK Positive Denmark has witnessed growth in both size and influence. Our expanded membership, comprising individuals who share our passion for making a difference in the lives of ALK-positive lung cancer patients, has diversified our team. This diversity allows us to approach challenges with creativity and resilience.
While our communication and outreach efforts have evolved, we acknowledge the room for improvement, particularly in leveraging digital platforms. The ongoing evolution in this aspect aims to increase visibility, amplify advocacy efforts, and influence policy changes in support of our cause.
In summary, ALK Positive Denmark has achieved notable milestones in advocacy, research, and international collaboration, showcasing our dynamic commitment to continuous improvement and an unwavering dedication to the well-being of ALK-positive lung cancer patients.
Looking ahead, what is the vision for ALK Positive Denmark in the coming years? Are there any strategic goals or projects that the organization is particularly excited about?
The weighty responsibility of establishing an organization that transcends the efforts of its founding members is at the forefront of my mind as the founding President and Chairman of the board.
Furthermore, over the past 1½ years, a resounding realization has solidified - the critical role that financial resources play in driving impactful change. While advocacy and raising awareness are crucial, the nexus between funding and the advancement of research, improved patient outcomes, or finding a cure cannot be overstated.
Regrettably, within this brief period, we have suffered the loss of three members, including our founding member Lars Erik Larsen, to this formidable disease. The efficacy of TKIs can sometimes create a deceptive illusion, making it easy to forget that individuals are grappling with a terminal illness. Therefore, our primary goal in the coming years is to actively raise funds. These resources will not only empower us to shape pertinent research inquiries through our international medical advisory board but will also provide the means to financially support these crucial research initiatives.
Additionally, we aim to elevate the profile of ALK-positive lung cancer within the dynamic biotech landscape in Denmark. We harbor dreams that extend to capturing enough attention and support to pave the way for the establishment of the next Novo Nordisk within the domain of gene-mutated lung cancer! Through the cultivation of partnerships among researchers, active engagement with the biotech sector, and strategic awareness initiatives, we endeavor to catalyze breakthroughs and innovations that have the potential to reshape the treatment landscape and improve patient outcomes.
In essence, our vision for ALK Positive Denmark in the coming years revolves around securing the necessary financial resources to drive impactful research initiatives and positioning ALK-positive lung cancer at the forefront of Denmark's biotech space, with the ultimate goal of ushering in transformative developments akin to industry leaders like Novo Nordisk.
Lastly, what message would you like to convey to our readers regarding the significance of ALK Positive Denmark's work and the importance of supporting its mission?
In conclusion, I would like to emphasize the unique position of Denmark's highly digitalized health ecosystem and its potential to serve as a crucible for the next phase of medical advancement in ALK. Given our small yet representative community, we can be likened to a nursery for innovation in this field. Unlike larger countries that may experience slower results due to their massive scale, Denmark operates more like a nimble speedboat. This agility can potentially enable us to navigate swiftly and efficiently towards advancing the global goals of the ALK community.
Therefore, as we reach out for international support, I earnestly hope that our global fraternity will rally behind our mission for better patient outcomes worldwide. Our shared commitment to this cause underscores that we are all in this together. Supporting ALK Positive Denmark means contributing to a dynamic force that can drive significant advancements in the global fight against ALK-positive lung cancer.
Interview by: Duncan Preece
Om ALK Positiv Danmark:
· Vi arbejder for at udbrede kendskabet til og tilgængeligheden af nye behandlinger, som allerede nu markant forlænger patienters liv, og skaber håb om en egentlig kur.
· Vi arbejder for at støtte indsamlingen af midler til forskning i nye behandlinger. Forskning i lungekræft modtager færre midler end nogen anden større kræftform.
· Vi arbejder for at fremme rettighederne for patienter med ALK positiv lungekræft i Danmark bl.a. ved at sikre rettidig adgang til nyudviklet medicin og banebrydende behandlingsmuligheder gennem vidensdeling, samt ved at fremme forskningen i Danmark og internationalt.
· Vi arbejder for at udbrede kendskabet til sygdommen blandt læger og lovgivere for at sikre den tidligst mulige diagnosticering - og efterfølgende den bedst mulige behandling.
About ALK Positive Denmark:
We work to spread awareness and availability of new treatments that already significantly prolong patients' lives and create hope for a real cure.
We work to support the collection of funds for research of new treatments. Research for lung cancer receives less funding than any other major cancer.
We work to promote the rights of patients with ALK-positive lung cancer in Denmark by ensuring timely access to newly developed medicine and groundbreaking treatment options through knowledge sharing as well as by promoting research in Denmark and internationally.
We work to spread awareness of the disease among doctors and legislators to ensure the earliest possible diagnosis and subsequently the best possible treatment.