Patient Spotlight: How to Fundraise for ALK Positive
EDITOR’S NOTE: This Blog was originally posted in November of 2020, but the stories of individual fundraising are still very relevant today. We hope that reading about Amanda and Stian’s success with their “peer-to-peer” fundraising will help you with a successful campaign that can , in turn, enable us to fund more and better research. #strongertogether
Featuring:
Amanda Nerstad, Knoxville, TN (funds raised for ALK Positive in 2019: $18,335)
Stian Aagnes, Tromsø, Norway (funds raised for ALK Positive in 2019: $24,500)
Research for the right treatments is behind every ALK-positive patient’s hopeful prognosis. While ALK-positive patients now live longer than ever before, we still need more. Our aim at ALK Positive is to improve the life expectancy and quality of life of every ALK-positive cancer patient worldwide and for this reason we are dedicated to funding rigorously-selected, cutting edge research. Fundraising is an essential factor driving this research and all members are encouraged to actively donate and/or fundraise towards our common goal. Read on to find out how two of our members organized their own fundraisers and what advice they have for those interested in fundraising for ALK Positive.
Note to members: We actively encourage any and all donation and fundraising efforts, no matter how big or small. Every little helps and everything counts. Also, in the era of COVID-19, be creative if you’re interested in hosting a fundraising event. Virtual events or safe, socially-distanced events (if permitted in your area) are an alternative idea which may even offer your donors an opportunity to do something different in these times of increased social isolation. Simply asking friends, family and your community for a contribution is also always a good – and usually effective – strategy.
Amanda Nerstad
1. Can you share a little about your journey with lung cancer?
Patient Spotlight: How to Fundraise for ALK Positive
Featuring:
Amanda Nerstad, Knoxville, TN (funds raised for ALK Positive in 2019: $18,335)
Stian Aagnes, Tromsø, Norway (funds raised for ALK Positive in 2019: $24,500)
Research for the right treatments is behind every ALK-positive patient’s hopeful prognosis. While ALK-positive patients now live longer than ever before, we need to continue this upward path. Our aim at ALK Positive is to improve the life expectancy and quality of life of every ALK-Positive cancer patient worldwide and for this reason we are dedicated to funding rigorously-selected, cutting edge research. Fundraising is an essential factor driving this research and all members are encouraged to actively donate and/or fundraise towards our common goal. Read on to find out how two of our members organized their own fundraisers and what advice they have for those interested in fundraising for ALK Positive.
Note to members: We actively encourage any and all donation and fundraising efforts, no matter how big or small. Every little bit helps and everything counts towards our common goal. Also, in the era of COVID-19, be creative if you’re interested in hosting a fundraising event. Virtual events or safe, socially-distanced events (if permitted in your area) are an alternative idea which may even offer your donors an opportunity to do something different in these times of increased social isolation. Simply asking friends, family and your community for a contribution is also always a good, and usually highly effective, strategy.
Amanda Nerstad
1. Can you share a little about your journey with lung cancer?
I was diagnosed in September 2016 with stage IV NSCLC, ALK-positive. Like many other ALK-positive survivors, it came as a complete shock. I was an active 38-year old mom and wife. I went for a jog and was completely out of breath one day. I thought I had walking pneumonia and decided to go into a walk-in clinic for a chest X-ray. That is when the doctor told me to go to the ER, and after many tests, a VATS surgery, and 8 days in the hospital I found out that I had lung cancer.
2. What inspired you to fundraise for ALK Positive?
My kids actually came up with the idea of doing a fundraiser in 2017. Every summer our family does a summer bucket list. We write activities down that we want to accomplish for the summer such as going to the beach, hiking in the Smokies, etc. My daughter Isabella wanted us to write down "Lemonade Stand". As I was writing that down she said, "Why don't we do it for a cause?". I expected her to say an animal shelter or similar, which would have been fine, but instead said, "Why don't we do it for lung cancer?". I was definitely a proud mom. So, we emailed all of our friends and family and told them about our “Lemonade for LUNGevity” event and asked them to come and help. Isabella and Greta were very specific on our lemonade stand. They wanted it to be a Dance-Lemonade stand with friends and family passing out lemonades, dancing to fun music and having a great time while raising money for lung cancer research! Isabella and Greta had a goal of $100 for our first “Lemonade for LUNGevity” fundraiser, and we ended up making just over $5,000! They took a bad situation and made it into a fun situation! Since then we have had 3 more Lemonade for LUNGS dance party fundraisers and actually have sponsors now! Last year we had a DJ, bounce house, balloon maker, silent auction, and many more fun family activities during the fundraiser! Our family has raised over $65,000 for lung cancer research since!
3. Did you have previous experience with fundraising? Were you nervous at first about asking people for money?
I had helped friends with fundraisers in the past, but not organizing my own. My friends helped us organize and get sponsors. I was nervous at first asking people to come and donate, but I have also realized that people want to help, so every year now we let them know the date, and many people say how excited they are to come, help and raise money for our events!
4. Your Lemonade Stand raised a significant amount towards ALK research in 2019. What are some top tips you would share with someone who would like to fundraise for ALK Positive but doesn’t know where to start or what to do?
Figure out what is important to you and your family and friends during this journey. Whether if it is a lemonade stand, a walk/run event, dinner event, painting party, etc. Make it personal! Share your story in your community, because people want to help and once they realize that this could happen to them too, and know about you, they will help! Call your news and tell them it's Lung Cancer Awareness Month and that you are having a fundraiser. Tell your local newspaper, tell your local hospital and invite your doctor, email all of your friends and family and ask for their help! We have realized that we can't do it all on our own! It takes a village, and with the help of all of us working together to fundraise in our own communities, our friends and family helping, doctors and researchers working together, we all have one goal - a cure - and I am not giving up hope and faith for a cure!
Stian Aagnes
1. Can you share a little about your journey with lung cancer?
My journey started with an enlarged neck lymph node in February 2018. I then got a dry cough in May. Since I have never been sick, I thought it would pass. I started catching my breath in September, and thought, “Ok, something is not right.” The doctors thought I had hypersensitivity to mold, so I was misdiagnosed for 8 months. I finally got my diagnosis as ALK-positive on the 17th of May, 2019 – the Norwegian National Day. Two weeks later my youngest son came into this world.
As for most of us, my diagnosis came as a shock. I thought I’d be dead by December as my PET scan lit up like a Christmas tree. My whole spine, both lungs, lymph nodes, hepatic duct and so on. I was using several liters of oxygen continuously.
I got started on Alectinib, and the response was almost instant. Two weeks later I was running my first 500 meters, one year later a marathon. I had close to a complete response, and have been stable since.
I started researching early, and this has been one of my driving factors. It gives me hope, but most of all lets me feel that I’m at least able to control a little bit of this journey. That’s how I cope mentally (but with three kids I really don’t have the time to feel sick). It’s through my research that I found ALK Positive on Facebook, and today I’m very happy I joined.
There is a lot of combined knowledge in the group, and with such a small portion ALK in NSCLC, we need to stay in the front seat of decision making where we’re treated. We cannot expect all of our oncologists to be experts, so we need to teach them the details.
2. What inspired you to fundraise for ALK Positive?
Together we can make a difference. Together we can get things done. We are such a small subset, that we need to join forces to achieve our common goal - not dying from this. I believe that these efforts will yield results, and I plan to meet my future grandchildren.
On a professional note: the efforts undertaken by the ALK Positive Medical Committee are key in achieving these results. The funding needs to be methodically decided, with the right expertise evaluating prospects, and I believe that this is being achieved. It makes the decision to fundraise simple for me.
3. Did you have previous experience with fundraising? Were you nervous at first about asking people for money?
I have never fundraised before, and in Norway it’s not really a big thing unless it’s a nationwide cause etc. I was really nervous, and I thought that nobody would donate. I even put up $500 myself at first, so that it looked like that at least someone believed in my cause. To my surprise, I ended up raising over $24,000 dollars, which was quite hard to believe.
4. You raised a significant amount for ALK Positive in 2019 by doing something very simple yet very effective. You shared your personal story on Facebook in a very genuine, heartfelt post and encouraged people to donate, and it paid off big time. What are some top tips you would share with someone who would like to fundraise for ALK Positive but doesn’t know where to start or what to do? How can they replicate what you did?
My tip is: be brave enough to open your heart and show your emotions. People donate when they feel a connection to the subject you are trying to convey. Since few people actually feel a connection to lung cancer at a young age, we could probably connect better by letting them know of all the similar problems we can face, for example not being there for our children, grandchildren etc.
We are always getting new members in this group, so we all need to see it as one great effort that we can all contribute to. If we can do that, there will always be new people after you to do the next fundraiser. Together, we can achieve great things.
Interviews by: Christina Weber