Member and fellow ALKie Debbi Martinez is the volunteer working behind the scenes with ALK Positive’s Kindful fundraising platform and doing a great job at that. For this year’s Lung Cancer Awareness Month, we wanted to honor a volunteer that is not visible by being at the forefront of operations, but is just as invaluable in helping our fundraising efforts go smoothly and seamlessly. Read on to learn more about Debbi, her background, her journey with lung cancer, and the impact she’s making in the organization.

1) Tell us a little about yourself - your personal and professional background - and your journey with ALK-positive lung cancer so far.

I currently reside in New Jersey. I am originally from Massachusetts and have also lived in Wisconsin and Washington, DC. Spending time with family and friends, walking in nature, gardening, volunteering, and traveling to new places are some of my favorite things to do. I retired in 2016 after working for many years in Information Technology as a programmer, systems analyst, and compliance officer. I greatly enjoy putting these skills to use by volunteering for ALK Positive, Inc., as well as for a non-profit crisis intervention call and chat center.

I have a wonderful husband and two amazing daughters. I am so very grateful for the support of my loving family and friends on my ALK journey.

In February 2018, I noticed I could not carry on a conversation without taking extra breaths while walking with my neighbor. Several days later I also noticed some shortness of breath even when resting. A doctor’s exam, scans and a biopsy led to the confirmed diagnosis of stage IV ALK-positive lung cancer a few weeks later.

I have been taking Alecensa (Alectinib) since my diagnosis 4.5 years ago. Four months ago, progression was detected, and a biopsy revealed MET amplification as well as my original ALK type. I elected to have surgery to remove the one tumor. I will continue on Alectinib and have a plan in place to tackle any additional progression which may arise. I remain optimistic and hopeful thanks to groundbreaking research!

2) What do you wish you knew when you were first diagnosed? What advice would you give a newly-diagnosed patient?

I wish I knew sooner about the supportive, empathetic, and informative ALK Positive Facebook group and alkpositive.org! I started using Facebook specifically to join the ALK Positive group, and through that I have made many wonderful friends and learned so much about ALK Positive cancer, research and treatments.

I would advise newly diagnosed patients to join a community of cancer patients—and especially those with ALK-positive cancer—when they feel ready. Also, I recommend learning as much as you can about your diagnosis and advocating for yourself. Alkpositive.org is a wonderful source of information! Research gives us hope!

3) You are one of our 'hidden heroes' - one of those volunteers who work 'behind the scenes' yet do very crucial work for the organization. Tell us a little about the volunteer work you do for ALK Positive, Inc. You are heavily involved with our fundraising platform, Kindful, as well as volunteering for the Finance Committee. Tell us more about what this work entails.

I am a member of the Accounting Group, Finance Committee, Fundraising Committee, and Second Opinion Program. My roles are primarily associated with using the Kindful software platform as an administrator. I enjoy meeting with other committee members and working as a team.

For accounting, I run and reconcile month-end income reports from Kindful, enter offline donations and ensure the acknowledgements are sent. I also provide other metrics as needed.

For fundraising, I update Kindful, help answer questions that come into the group, track fundraising progress, and create the honor and memorial donation notifications.

For the Second Opinion Program, I am one of the application approvers, and I make payments to the providers.

4) What has prompted you to volunteer your time and skills to ALK Positive, Inc? Do you find that volunteering helps you cope better with the mental and emotional side of this diagnosis? Has it given you a new (or different) sense of purpose?

I am energized by and have benefited so much from this great organization that I wanted to give back. Volunteering helps me cope better with my diagnosis as it gives me another focus and sense of purpose. There are so many ways to volunteer. I encourage anyone who would like to volunteer for ALK Positive, Inc. to email Nancee.Pronsati@alkpositive.org who will send you a volunteer interest form to fill out.

Interview by: Christina Weber

Patient Spotlight – Debbi Martinez, New Jersey, USA