I wish to report that last week’s fundraiser was a HUGH success. We raised over $27,000!!!
The evening was filled with warm wishes, fun, great food and music. We had an excellent presentation by our Key Note Speaker Robert Pugert (AYA Cancer Warrior and future Pediatric Oncologist). Robert touched our hearts with words of wisdom on the love and support of family, the value of solid cancer research and hope for a future where cancer is but a thing of the past!!! Imagine..a world without cancer!
Special thanks to Committee Chair Tina Poulos, Jean Hillman, Elaine Campbell, Mary and Jim Diamond, Toula Pyros, Fr. F Jim and Presbytera Goldie Doukas, Acia Shaheen, Betty and John Poulos, Becky Giallourakis, Elpida Kosmides, Jan Spooner, Nick Giallourakis, Stephanie Zavatchen, Polly Furey, CJ Mosure, Lee Santorelli, Helene & Anthony Santorelli, Gabby Kariotakis, Nick and Diane Kariotakis, Maria and Steve Alex, Matina Manos, Bryan Boss, Irene Steffas, Maggie Steffas, Steve Steffas, Claude Campbell, Mary Levendusky, Myrta Holden, Edna Oroczo, Phil and Alysse Giallourakis, Barb Michael, Tracy Michael, Ellie Chrisman, Tammy Asimakis, Alexis Steffas, Sophia Asmis, Maria Steffas and Linda Glynias.
I really hope I didn’t leave anyone out of my list…if so, I will add them next week.
Also, special thanks to our new friends from Korea (Jin Chou, Yegi and Ashley) who are producing a Documentary on Cancer in the USA. Soon you will receive a link to this new documentary where the SGAYA Cancer Research Foundation and Friends will be highlighted.
George Giallourakis, Mike Catanzarite, Lou and Ann Frangos, Jim Doyle, Gary L. Gross, Rob Risman, David and Dena Grubb, The Paras Family, Paul & Christine Venizelos, Thrivent Gift Multiplier Program, Paul Porch, David P Richards, Scott & Kimberly Williams, Steven Zalany, Cindy & Don Sears, Renee Seybert, Sue Giallourakis, Estelle Callas, Amanda Dempsey, Sandy Tata, Janette O’Brian, Mary Kelly Baddour, Linda Damiani, Philoptochos Society of St. Demetrios Greek Orthodox Church, Eileen Tassie, Bobby Catanza, Elaine Campbell, Toula Pyros, Linda Lens Photography, Jeremy Dancy, Debbie Webster, Jim & Joel Spevock, Jimmy Lee, Mr & Mrs. Richard R. McClain, Anna & David Goldense, David Wozniak, Becky Prince, Acia Shaheen, Jim Voiklis, Lee & Anglikie Zapis, Tom Abersold, Charles Scott Salon…
Description of the YA Cancer Patient Packages:
The treatment itches, it burns, it makes you exhausted and sick, and because it’s so expensive, many young patients can’t afford the simple things that make it bearable. When you support the BE CALM STAY STRONG program, by sponsoring a cancer care basket for a young cancer patient in need, you are making an immediate impact in the life of a cancer patient. When you sponsor a BE CALM STAY STRONG basket, we work with hospitals and social workers that support cancer patients to ensure that it gets to someone who needs it, right when they need it the most. A personal note is included in the basket. All proceeds from your sponsorship are used to support the BE CALM STAY STRONG program – it’s a purchase with a purpose. FOR MORE INFORMATION CONTACT INFO@FIGHTCONQUERCURE.COM.
SPECIAL THANKS TO THE FOLLOWING INDIVIDUALS WHO HAVE ENABLED US TO PROVIDE BE CALM STAY STRONG PACKAGES TO PATIENTS. YOUR NAMES WILL BE INCLUDED IN A PATIENT PACKAGE.
Andrew & Jenny Illcin, Tom Basista, Kelly Orozco, Tim Greene, Tim O’Shaugnessy, David Hillie, Ken Yackle, Mike Kraft, Manual & Linda M. Glynias, Donna Vassos, Betty & John Poulos, Brendan & Anne Fitzgerald, Darrin & Tricia Rodatz, Nancy & Rick Cusic, Jim & Connie Giallourakis, Bill & Connie Pastis, Scott & Lisa Lee, Rick & Ilona Bartch, Jerry & Diane Babinyecz, Jack & Rita Sabolid, Lou & Baiba Celesky, Deborah Barkauskas, George & Jan Giallourakis, Ted & Angela Giallourakis, Bill & Shannon Giallourakis, and (will your name be next??)…
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.”
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?
We are happy to announce that the SGAYA Cancer Research Fund will be sending a qualified applicant to the OMG 2014 Conference.
OMG 2014 Conference is an annual event sponsored by
AKA “i’m too young for this! ”
Stupid Cancer, a 501(c)3 non-profit organization, is the dominant healthcare brand for millions affected by young adult cancer.
I am a huge fan of Stupid Cancer because of the genuine commitment to serving Young Adult Cancer Survivors through Social Media Advocacy work (and more). I urge you to check out their website to learn more about Stupid Cancer!
Visit them at stupidcancer.org
OMG 2014 Conference info:
The conference will take place in Vegas on April 24 – 27, 2014.
If you are a Young Adult Cancer Survivor and are thinking about attending this fabulous conference please visit this link:
The link for the submission form is: http://stpdcn.cr/SGAYAPSF
For more information upload the flyer here (this might take an extra step): patient scholarship flyer
As a Caregiver and YA Cancer Advocate I am looking forward to attending this conference.
I hope to see you in Vegas on April 24!!!
more photos will be posted very soon!
FOR STAFF, FAMILIES, AND PATIENTS ON RAINBOW 2
Our very first Wellness Project took place on Friday at Rainbow Babies & Childrens’ Hospital. The SGAYA Smoothie Day was a hit! Smoothies are a healthy and easy way to enjoy a nourishing TREAT…especially for young people receiving chemotherapy…and for family members who, day after day, choose to remain at the side of their loved ones.
Stephanie and a helpful Volunteer prepared
Stephanie for letting me get in on