Matthew Zachary is a 16 year pediatric brain cancer survivor. He formed Stupid Cancer (a.k.a I’m Too Young For This! Cancer Foundation), an advocacy, support, and research organization that works for survivors and care providers with the aim to end isolation, improve quality of life, provide information regarding resources to young adults with cancer, and form a community where young adults in cancer world can share and help each other.
I interviewed Matthew Zachary and should say the he is a man with focus and totally in love with his job. Read on for an interesting interview where Matthew talks about problems faced by young adults and his organization.
Hope you enjoy the interview.
Me: What was your inspiration to start a non-profit organization for young adults?
Matthew: My experience of having been diagnosed with cancer inspired me. Actually, you go through the experience and realize that you are not treated age appropriately. The intense feel of isolation and the lack of appreciation for the fact that you are having cancer at this age is very very different than having cancer as a child or adult.
Me: Can you define ‘young’, according to your organization, Stupid Cancer?
Matthew: We define young adult as 15-39 years in the US.
Me: Do you think that a young person diagnosed with cancer has different worries/apprehensions than a person in his middle age?
Matthew: Yes, definitely. The problems faced by a young adult diagnosed with cancer are definitely different from a person diagnosed later in life. The most significant difficulty is that of fertility. When you are diagnosed with cancer in your 20s, 30s… your right to be a parent is at peril. This would not be the case when you are diagnosed at say in your 60s and 70s.
Apart from this, there are a myriad of issues that young adults with cancer face. In the United States, health insurance can be a concern. Young adults may be worried about whether their insurance would cover their treatment expenses. Some may even be denied insurance.
If you are diagnosed with cancer when you are getting out of college, like I was, the problems are many. Coming out of cancer world and reentering the workforce is not easy. Parenting becomes a tricky and intricate job. Raising a child when you have cancer is very difficult. If one of the parents have cancer, it is difficult to explain to the children. How can you explain the death of a parent to a 6 or 7 year old?
Me: Does Stupid Cancer offer one-on-one peer support to young adults diagnosed with cancer?
Matthew: Stupid cancer does not provide one on one peer support. What we do is connect people with communities and resources to facilitate peer support. We are here to ensure that no young adult diagnosed with cancer goes unaware of the resources available to survive in the cancer world.
Me: How does Stupid Cancer initiatives include, pediatric cancer survivors not so young anymore?
Matthew: As long as you were diagnosed when under 40 yrs, you are and remain a young adult cancer survivor. I am going to turn 40 in two years and this could very well be relevant for me too.
Me: How has your passion for music helped you in your fight against cancer?
Mathew: I was a concert pianist. Actually, my music was stolen from me when I was diagnosed. I lost use of my left hand and could not play for a very long time. However, over 5 to 10 years I have regained my abilities to play and I should add that music led me to believe that cancer was not going to take away anything from me.
Me: How have the cancer awareness, treatment, and research fared since the time of your diagnosis?
Matthew: Cancer research has been reinventing itself in the last 20 years. Genetics, epigenetics, biomarkers has transformed the way cancer is treated and research will make it better for patients in the coming years too.
Me: What are your new goals for Stupid Cancer?
Matthew: We are celebrating our 5-year anniversary. And in the coming next 5 years we hope to be proactive and reach out to more young adults. The most significant ambition we have is not to limit ourselves to young adults but extend our support and resources to young adults who are parents, young adults with children who have cancer, young adults whose parents have cancer. We want Stupid Cancer to be the ‘go-to’ organization for any young adult affected by cancer so they will be empowered to get busy living.
Get to know what Stupid Cancer is doing for young adults-
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