MIB Agents is proud to collaborate with Fishin’ for the Cure to fund osteosarcoma research through our OutSmarting Osteosarcoma grant program. Fishin’ for the Cure was started in 2008 by OsteoAngel Matthew Ross Siegle and his family and the foundation has supported many osteosarcoma research projects over the years with their tireless fundraising efforts. We asked Matt’s sister and Fishin’ for the Cure co-founder Tracy Russo to tell us more about Matt, and what drives their continued fundraising momentum and success.
Tell us about Matt's life and passions before he was diagnosed with osteosarcoma.
Matt was always the life of the party, and the one you could count on to make you laugh! He had a zest for life and always had a smile on his face, even throughout his 7 year battle with osteosarcoma! He loved spending time with his friends and family, the sport of wrestling, cooking, playing poker, playing guitar in his garage band, and sharing his creative talents through his artwork. I’d say his biggest passion in life was fishing! He would do it anywhere and anytime he could!
How was Matt first diagnosed?
Matt had noticed lingering pain in his knee for a month or so, but being an avid wrestler and a tall, growing 18-year-old boy, who was also a class clown and prankster, we thought it was probably something minor due to one of these reasons. After it didn’t subside, our mom, who was a nurse, scheduled him for an appointment with the hometown orthopedic. She was on shift down the hall at the same hospital during the appointment and told him to call her over if they needed her. As soon as the doctor saw the x-ray, he knew immediately what it was and called my mom to come over! Being in a small rural Montana town of less than 5,000, it was quite amazing that the doctor knew what he was seeing – he had miraculously done one of his rotations with a doctor in Omaha who knew a lot about osteo! So, he immediately referred Matt and we drove there for the initial consultation and biopsy.
Matt was one of the Fishin' for the Cure founders. How did you all come up with the idea for the foundation?
Matt was diagnosed in 2003. In 2006 his cancer metastasized to his lungs. He had thoracotomies to remove the lung tumors and chemo again, but unfortunately relapsed with more lung metastasis in 2007 and then again in 2008. When we got the devastating news in 2008 of another relapse, we once again hopped in the car to travel and start treatment. During that drive, we all felt devastated. Trying to get our minds off the news we had just received and what was to come, I brought up the idea that maybe we could come up with a way to give back to the community and do our part to help others going through the same battle. Matt liked the idea so I asked him for some ideas, “What’s something you love that we could do?” His immediate response was poker or fishing. And with that, “Fishin’ For The Cure” was born!
What does a Fishin' for the Cure event look like?
The event is a fun filled day that brings the community together to help find a cure! We start the day off early with breakfast and the fisherman head out to prove they are the best! When time is up, we award the top fishing teams and have an evening of food and fun filled events like bounce houses, dunk tanks, face painting, boat rides, lantern or balloon releases, even helicopter rides at one event! There is usually an auction of many amazing, donated items as well as a raffle to help raise funds. We love to have local warriors attend so we can honor them and their families! Each event is specific to the state it’s in but they’re always filled with family fun, fishing and the common goal to cure childhood cancer one lake at a time!
It has been nearly 13 years since Matt passed away. What keeps you motivated to keep fundraising?
Matt battled osteosarcoma from the age of 18-25, so even though he was a young adult, because he had a childhood cancer, his treatments were all at children’s hospitals. Matt never complained and when we would try to comfort him, he would often respond to not worry about him, “I’m ok, but these other children, they are just kids and babies, it’s not okay what they are having to go through. They shouldn’t have to suffer like this!” He wanted to change things for them, and in one of our very last conversations I promised him we would never stop fighting to find a cure for him, and all the childhood cancer warriors!
Every warrior we meet and are honored to help in some way reminds us of our promise to Matt, for them…we will never stop fishing for a cure!
Fundraising can be very daunting, but Fishin' for the Cure has found a meaningful and successful fundraising recipe. What advice would you give to families and patient advocates interested in creating a fundraiser?
Fundraising is hard work. I would tell others interested in creating a fundraiser to find something that you or the patient/angel are passionate about! Then find others who want to join you – it takes a team of volunteers with all different talents and skills! When you are doing this work and sharing from the heart, the impact you will have on those you reach is just as important as the funds raised – as you show and share your passion for the cause, the inspiration and awareness spreads, and the fundraising efforts will increase.
Don’t be discouraged by a dollar figure raised, with the dismal amount of designated funding going to childhood cancer research (only 8%), every dollar that each family, patient advocate, or organization can give towards the cause is so important! I believe it is only through teamwork that we will reach our collaborative goal!
How did you decide to partner with MIB Agents to fund research?
When we were going through the process of determining what research would advance our quest for the cure and be most impactful, we reached out to MIB Agents and were extremely impressed with them. From the first meeting with Ann and then Christina, their passion and talents were evident. We were invited to sit in and be involved in the scientific review process, ask questions of the researchers, and give our feedback.
Participating in the grant recipient review process, and being able to choose our OutSmarting recipients, was a tremendous experience for our organization and gave us a great deal of hope! We were so impressed with MIB Agents and their thoroughness, processes, collaboration they have created and the work they were doing.
We felt confident that in partnering with MIB agents to fund research that we are putting our donors’ generous gifts in the hands of those that will really make an impact. Together we can do so much more!
You were able to present Ryan Roberts, MD, PhD from Nationwide Children's Hospital and Heather Gardner, DVM, PhD from Tufts University with research grants at FACTOR. How was that experience and what makes you excited about their research projects?
Being able to present Dr. Roberts and Dr. Gardner with their research grants at FACTOR was incredible. I was honored that because of our amazing donors we were able to fund their brilliant research ideas, both of which I believe could be crucial next steps in increasing survivorship! Being able to meet and get to know Dr. Roberts during FACTOR was an experience hard to explain. I was able to understand on a deeper level that we share the same personal passion to put an end to this dreadful disease – and how much of a difference we can make together. I had never thought of it quite like this – how necessary both sides are to continue forging through this battle. I knew without question the inspiration and hope that both Dr. Roberts and Dr. Gardner and their work has given us as families…. But when Dr. Roberts told me “Thank you, we couldn’t do this without you” and shared with me that we on the family, patient advocate side, sharing our stories of our warriors and angels are the ones giving them the inspiration they need to keep searching for a cure was so impactful!