Author Name: Deborah Morosini, MD, MSW
(not in photo)
Abstract Title: FoundationOne’s comprehensive genomic profiling of solid tumors from 669 adolescents and young adults reveal a distinct spectrum of targetable genomic alterations.
Author Name: Leonard Sender, MD
Abstract Title: A Phase II, Open-Label, Single-Arm, Multicenter, Pharmacokinetic Study of Intramuscular Asparaginase in Young Adults with Acute Lymphoblastic Leukemia or Lymphoblastic Lymphoma
Author Name: Melanie Goldfarb, MD, MS FACS
Abstract Title: Thyroid Cancer Specific Quality of Life and Health Utility in Adolescent and Young Adult Thyroid Survivors
First Place Award – $500
Author Name: Laura Mitchell, BA, BScN, MN, CON(C)
Abstract Title: Enhancing Young Adult Cancer Care: the significance of improving access to community programs
Author Name: Karen Fasciano, Psy.D.
Abstract Title: Development of a web-based support program for caregivers of young adults coping with cancer.
Author Name: Julie Kinamore
Abstract Title: An Outdoor Adventure Program for Young Adults with Cancer: Positive Effects on Body Image and Psychosocial Functioning
I wanted to share an email from one of last years’ recipients.
Dr. Catherine Fiona MacPherson’s (in photo below) research study is titled:
Please read an excerpt from Catherine’s message regarding the SGAYA Fund’s $500 Award impacted her research project:
“...follow-up to our conversation regarding the impact of the generous award from the Steven G. AYA Cancer Research Fund which the Consortium to Study Symptoms in Adolescents with Cancer (CS2AC) received at Critical Mass 2013.
I have attached the paper published in Pediatric Blood and Cancer this past summer which reports the primary findings of our study evaluating the feasibility and acceptability of a novel iPad application to explore symptoms and symptom clusters in AYAs with cancer.
The award enabled us to pay a medical illustrator to design Figure 1 which appears on page 3.
The inclusion of this figure notably enhanced the paper by providing example images of step by step completion of the app screens to complement the text description of the same. The figure enabled us to better convey the innovation and paradigm-shifting potential of the app and generate reader interest in further use and study of it. The paper is important in that it will serve as published preliminary data to support future grant applications for clinical pilot testing of the app’s potential to empower AYAs to gain insight into and communicate their unique symptom experience. Our award from the Steven G. AYA Cancer Research Fund therefore contributed significantly to moving forward our research agenda to positively impact symptom management for AYAs with cancer.
Again, thank you so very much, on behalf of all of us in CS2AC (cc’d on this email). Please do not hesitate to let us know if there is ever any way in which we could assist you. Your work is vitally important to advancing research and clinical care to benefit AYAs with cancer and we would be delighted to support it in any way we can to give back in return for the support you have given us.”
FOR MORE INFORMATION PLEASE CONTACT ANGIE:
TO PURCHASE YOUR TICKETS ONLINE
VISIT OUR WEBSITE
SAVE THE DATE!!
OCTOBER 30-31, 2014
IRIS S. & BERT L. WOLSTEIN RESEARCH BUILDING
2103 CORNELL ROAD
CLEVELAND, OHIO 44106
The symposium is sponsored by the Angie Fowler Adolescent and Young Adult Cancer Institute at University Hospitals Rainbow Babies & Children’s Hospital, UH Seidman Cancer, Case Comprehensive Cancer Center, and the Oregon Health & Science University Knight Cancer Institute.
(REGISTRATION FORM aya symposium 2014)
The focus of this two-day symposium is advancing AYA-related research, increasing federal funding, and exploration of scientific, clinical and psychological considerations in the AYA population.
KEY NOTE SPEAKER:
Clifton Leaf, Deputy Manager Editor, Fortune Magazine and Author, The Truth In Small Doses – Why We’re Losing the War on Cancer – and How to Win It.
FOR MORE INFORMATION PLEASE CONTACT: AYASYM2014@UHHOSPITALS.ORG
September is a special time of year that provides us with the unique opportunity to reflect on the impact that pediatric, adolescent, and young adult (PAYA) cancer has on all of us. As a society, there tends to be a larger focus on adult cancers, due to the volume and publicity associated with them. What PAYA cancer cases lack in volume, however, they more than make up for in the impact that they have on the lives of the individuals going through the struggle, as well as the lives of those around them. However, there are major improvements in PAYA research that can be made which might make all the difference going forward.
As a survivor of cancer myself, I know the reality all too well. I was diagnosed with AML Leukemia on October 2, 2008 – at the time I was 14 years old and had just started my freshman year of high school. As if trying to find new friends and fit in wasn’t hard enough, I had to deal with the stresses and uncertainty that came along with cancer as well. Life was certainly hard in these times, not only for myself, but also for my parents and others around me. My parents found ways to be at the hospital as much as possible while also balancing work and three other children; how they did it, I will never know. With the help and support of many, we got through our tough time; however, it is a situation that I would never wish on anyone, and that is why it is absolutely imperative that we continue to work towards increased funding and research for PAYA cancer.
I know the personal impact of PAYA cancer, but I also know the impact that PAYA research has on outcomes. The preferential treatment for me would have been a bone marrow transplant, however there was no match for me in the registry, and so I was forced to go ahead with strictly chemotherapy for my treatment. Since this is not the traditional or preferred method, my doctors offered that I try an extra experimental chemotherapy on top of the standard regiment. For me, the drugs were incredibly successful, and I was in remission after just one round of treatment – making me a firm believer in the power of research and experimental treatments.
Since PAYA cancer research is what helped me to survive, it has inspired me to take up the challenge of giving back to the cause, so that I can help others who might be in the unfortunate situation that I was once in. Thanks to the Steven G Foundation, I had the opportunity to do research on pediatric Medulloblastoma tumors in the lab of Dr. Alex Huang for the past two summers. It was truly an incredible experience, and to know that I was helping to give back to a cause that had given so much to me was very rewarding.
Now, I realize that not everyone out there has a personal tie with PAYA cancer, so you might be thinking, what’s my motivation? Why should I help the cause? Well, I very truly hope that no one reading this ever has to have any interaction with PAYA cancer. However, at this point, the best that we can do is hope. Why not guarantee that you will never have to be afraid of PAYA cancer? If we all work together, one day, we will be able to find a way to know cancer so well that it won’t be any more concerning than providing antibiotics for a common cold. That’s what I’m working toward. I work toward a day when parents will never have to live through the torment of watching their sick child pass away with nothing that can be done for them. I want to put an end to cancer. I hope that I can convince others to have the same goal.
A cure certainly isn’t going to happen overnight. The problem is complex – more complex than almost any other within the medical field. Also, PAYA is at a definite financial disadvantage. I mentioned earlier that adult cancers receive much more attention. Well, they also receive much more private and government funding for research. However, we should not be discouraged. There are still many factors on our side. The resilience of young people is something that can never be underestimated. Their hope in the future provides them with the attitude to persevere, even in the toughest circumstances. All that we need to do is to try our best to help with that fight. If the funding for PAYA cancer research could be brought up to be even half of what is used on adult cancers, the results could be life-changing – literally. Also, we cannot forget the importance of those who do the research. Without them, the goal can never be accomplished. This issue is too big to be solved by just one person; we need more researchers out there. To me, they are some of the most underappreciated heroes in our society. If we are able to make researchers the heroes of our society, then the best and brightest can be attracted to the field, thus helping the research to progress faster and further than ever.
Everyone is capable of making a difference. And it is definitely going to take all the help we can get if we want to put and end to PAYA cancers. I know I’m in, I hope that you will be too.
Originally Posted for Four Square Clobbers Cancer: http://4sqclobberscancer.com/
Thank you to Joe Baber for his assistance in preparing this blog. I couldn’t have done it without his assistance!
Since my son Steven’s diagnoses with Stage Four Osteosarcoma over 7 years ago, followed by a diagnosis of Secondary Acute Myelogenous Leukemia, which required a lifesaving Bone Marrow Transplant, I have learned a great deal about PAYA (Pediatric, Adolescent and Young Adult) Cancer.
I tend to obsess over these issues each and every time I hear about another young person being diagnosed with cancer. I obsess when I meet someone who is fighting for their life from cancer that is not the result of life style behaviors.
So what am I getting at? This morning I had a revelation!
Rock Hudson was a handsome movie star during the 1950’s and 60’s. During his youth women loved him! For over 30 years Rock was seen in movies and television. He left the public eye for a few years and then attempted to make a comeback. In the early 1980’s he returned to television to starin Dynasty with Linda Evans. Audiences were shocked at his appearance. What happened to Rock? Was he ill? He looked so gaunt! This isn’t the Rock we remember!
Sadly we later learned that Rock had AIDS. The public was shocked.
Rock Hudson provided a catalyst to the AIDS MOVEMENT. His diagnoses and death was the reality check needed for our society to realize that ANYONE COULD GET AIDS. After his passing, the entertainment industry embraced and used the legacy of Rock Hudson tocreate awareness about AIDS. One of Rock’s leading ladies of the movie era, Elizabeth Taylor took on the task of creating awareness for this terrible disease. There was a complete and total assault on AIDS in the Media and Entertainment Industry.
Since 1981, 1.7 million people were diagnosed with AIDS. Since 1981, approximately 619,000 have died from AIDS in the United States. Fortunately for AIDS Research, the media and the entertainment industry saw fit to create AIDS awareness which resulted in the development of very effective efforts to fund AIDS research and prevention programs. Apparently the attention caused by Rock Hudson, and the work of the media and entertainment industry since then were very effective! Today, AIDS is more treatable than ever before, and fewer people are dying each year from this tragic disease.
What does this have to do with Steven and all the other PAYA’s diagnosed with cancer?
Well, our children, adolescents and young adults with cancer have not been so fortunate! We have not experienced a media blitz to raise awareness. Yes, progress has been made for some life threatening cancers, but what about the more rare forms of the disease?
The National Institute of Health/National Cancer Institute (NIH/NCI) budget will provide only $195 million to Childhood Cancer Research (for ages 0-19 years) for 2014. This amount has decreased for the last several years. If you consider the effects of sequestration and inflation, you could say childhood cancer research funding is down 30% over 2008! To put aids funding in perspective to cancer funding, consider this: While the entire budget for all cancers, adults and children, is $4.9 billion, AIDS research is more than half at 2.9 billion! An estimated 15,529 people with an AIDS diagnosis died in the US during 2010 compared with 569,490 who died of cancer. Do you see a discrepancy here?
Every year 2,700 children (0 – 19 years old) will die from cancer. That’s 17% of the children diagnosed with cancer. What about the survivors? Do you recall Joe Baber’s report last week? To paraphrase Joe “even when a child reaches the 5-year survival milestone (an arbitrary number), they are still at risk of long term effects…When we talk about “cure rate” it never mentions that more than 90% of those “cured” have serious or life threatening side effects or even secondary cancers caused by the treatment.”
What about AYA (adolescents and young adults’ ages 15 – 39 years) with cancer? Cancer is the leading cause of death (excluding homicide, suicide and unintentional injury) in this age group. In males, besides heart disease, cancer is the leading cause of death. In women it is the leading cause of death (Bleyer, Viny, & Barr, 2006).
Where is the Media? Where is the Entertainment Industry? PAYA Cancer shouldn’t be relegated to Special Interest Blogs by heartbroken parents who have lost their children or PAYA Cancer survivors sharing their stories. PAYA Cancer shouldn’t be a sound bite on the evening news that highlights a Walkathon by a few hundred parents and children during the month of September (childhood cancer awareness month) or about a young man or woman bike riding across the country to raise money for a specific cancer. MORE NEEDS TO BE DONE!!!
We appreciate last year’s STAND UP TO CANCER television program highlighting Taylor Swift’s awesome song “Ronan” but MORE NEEDS TO BE DONE!!! After the Stand Up To Cancer Program, did you hear the song “Ronan” played on the radio? Did it make the TOP TEN?
We appreciate all of the wonderful childhood, adolescent and young adult cancer organizations raising awareness and providing support to hundreds of families each year…..BUT MORE NEEDS TO BE DONE!!
We appreciate movies like 50/50 creating some awareness (a rather light hearted attempt at that) of the stresses and fears that a young adult experiences when diagnosed with cancer, BUT MORE NEEDS TO BE DONE.
Where is our ROCK HUDSON???
Is there some way the media and our society can come to an understanding that we parents and family members also grieve each time we lose one of our children to cancer?
The other day, I was reminded of parental pain of loss when I watched the news as a couple grieved over the loss of their child who was murdered at Sandy Hook Elementary School.
How often are parents asked to share their grief over the loss of their child to cancer on national television?
Is the grief of parent who lost their child to cancer any less than those unfortunate families at Sandy Hook? Where is the shock? Where is the disgust?
Who will champion the cause of Pediatric, Adolescent, and Young Adult Cancers? What will it take for the media to dig in and help? How many more children will we lose to Brain Tumors (a childhood cancer that is increasing in frequency every year)? How many teenage boys and girls will lose their limbs or life to a Sarcoma (where treatments haven’t changed in over 30 years)? How many young adult women will die of Breast Cancer (as this age group is more likely to die than any other group)?
Where is our champion? Who else needs to die for the cause?