Advocacy

EVIDENCED BASED CARE FOR AYA’S – AMELIA BAFFA

CONGRATULATIONS TO AMELIA BAFFA, CLINICAL ONCOLOGY NURSE, AYA PATIENT NAVIGATOR AT RAINBOW, BABIES & CHIMG_5577ILDRENS’ HOSPITAL AND SEIDMAN CANCER CENTER FOR HER CONTINUED EFFORTS TO IMPROVE CARE TO ADOLESCENTS AND YOUNG ADULT CANCER PATIENTS,

AMELIA RESEARCH POSTER WAS PRESENTED AT THE ACADEMY OF ONCOLOGY NURSE
NAVIGATOR CONFERENCE IN ATLANTA, GEORGIA LAST WEEK.

OVER 700 ONCOLOGY NURSES ATTENDED THE CONFERENCE, AND MOST OF THEM WERE WORKING VERY HARD TO RAISE AWARENESS OF THE NEEDS OF AYA CANCER PATIENTS DURING AND AFTER TREATMENTS.

THANK YOU AMELIA FOR YOUR DEDICATED WORK!!!

FIGHT! CONQUER! CURE!!!

GO FOR THE GOLD – CHILDHOOD CANCER AWARENESS MONTH

FRIENDS

PLEASE REMEMBER THAT SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH. 

PLEASE REMEMBER THAT CHILDHOOD CANCER SURVIVORS BECOME ADOLESCENTS AND YOUNG ADULTS WITH SECONDARY ILLNESSES 

PLEASE REMEMBER THAT EACH DAY PARENTS ARE MOURNING THE LOSS OF THEIR CHILD AS A RESULT OF CANCER.

PLEASE REMEMBER THAT PEDIATRIC CANCER IS THE #1 DISEASE RELATED KILLER OF KIDS IN THE UNITED STATES.

KNOW THAT THE NIH (NATIONAL INSTITUTE OF HEALTH – WHERE YOUR TAX DOLLARS GO) GETS $30 BILLION FOR RESEARCH ANNUALLY, YET CHILDHOOD CANCER RESEARCH GETS LESS THAN $200 MILLION. THE DEADLIEST CHILDHOOD CANCERS GET LITTLE OR NO FUNDING.

IT’S NOT A MATTER OF MORE MONEY, IT’S A MATTER OF PRIORITIES.ribbon

 

 

 

 

WE MUST MAKE CHILDHOOD CANCER RESEARCH A NATIONAL PRIORITY AND GIVE KIDS PEDIATRIC CURES, TREATMENTS, PROTOCOLS AND HOPE!!!

fight! conquer! CURE!!!

EMILY’S RAINBOW RUN and Family Walk – April 19th

YOU ARE INVITED

TO

EMILY’S RAINBOW RUN and Family Walk

In honor of the Memory of our friend Emily Lewis 

The event will take place

Sunday, April 19th, 2015

Westlake High School

Westlake, Ohio 44145

4 MILE TIME RACE starts at 8 am

2 MILE RUN/WALK starts at 8:05 am

Kids Run starts approximately at 9:15 am

To register and for more information visit:

www.emilysrainbowfund.org

or

info@emilysrainbowfund.org

or download this flyer and registration form 2015_ERR_Registration

EmilyPhoto Emily8

Cleveland: what a great place!

Hi folks,

As I sit here watching Neptune dump another 6 inches of snow, I remember a time when Steve was in the hospital during a mega February snow storm. Harry was supposed to stay the night and I was going home…however, the weather was so incredibly awful, I just decided to remain safe in Steve’s hospital room.  Harry and I shared a single bed next to Steven… It was a good decision as the weather was wicked!

Safety in the hospital…staying over night in the hospital…common phrases we hear everyday when we are impacted by a serious illness or a planned or unplanned surgery.

We are fortunate to have that “safe place” here in Cleveland.  We our blessed to have University Hospitals and the Cleveland Clinic.  It’s nice to be able to choose based on one’s needs.

Interestingly folks outside of Cleveland, particularly our friends on the East and West Coasts…aren’t aware of the medical facilities available to us Clevelanders’. I recall attending a conference where out of towners’ were AMAZED at the medical facilities and AYA CANCER SERVICES  …here in Cleveland…Wow!

So this is my plug for my hometown.

And also to say…thanks.

Last but not least…we continue to deliver BE CALM STAY STRONG PACKAGES for YA Cancer Patients. Feel free to email me at angie@fightconquercure.com to learn how you can support this important service.

Below you will see a photo of Erin Gibson, Pediatric Oncology Social Worker at the Cleveland Clinic’s Children’s Hospital, and me…with ten BE CALM STAY STRONG PACKAGES  for Ya Cancer patients and two bags of apples and two bags of oranges for their Ronald MacDonald Family Room. Anyone who has had an extended stay in a children’s hospital has likely visited the Ronald MacDonald Family Room….a great refuge.

 

clevel clinic photo

More Thank You’s needed here and MORE!

Be Calm Stay Strong Package for YA Cancer Patients in NE Ohio.

We have raised $2105 for the BE CALM STAY STRONG PACKAGES. SO MANY PEOPLE TO THANK.

HERE ARE THE NAMES OF THE PEOPLE WHO HAVE CONTRIBUTED TO THE CONTENTS:

Judi Kackloudis

Becky Prince

John & Christine Steigerwald

Lisa Lee

George & Jan Giallourakis

Deborah Barkouskas

Elizabeth Pastis

Bill & Connie Pastis

Jim & Connie Giallourakis

Betty & John Poulos

Darrin & Tricia Rudatz

Nancy & Rick Cusick

Andy & Jennifer Ilcin

Tom & Leslie Basista

Kelly Orozco

Tim Green

Tim O’Shaugnessy

David Hillie

Ken Yackle

Mike Kraft

Manuel & Linda Glynias

Donna Vassos

IMG_1376

TAKE A BITE OUT OF AYA CANCER – WE DID IT!!

Hello Friends,

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.

AND Special Thanks to our Sponsors and Donors —

YOUR CONTINUOUS SUPPORT HUMBLES US!

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…

AND ABOUT THE BE CALM STAY STRONG YA Cancer Packages—

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??)…

2015 evening 210649591_1044544355572578_1211191570983181861_n (1) 1012983_1044544588905888_5638547904224652504_n 10952411_1044544818905865_4420761336225640273_n 10952116_1044544918905855_1766155033557131484_n 10947230_1044544832239197_2198225543566364832_n 10945572_1044545118905835_8252298570502884950_n 10945029_1044544442239236_6559908465070072989_n 10943028_1044544532239227_3919245488509642511_n 10943026_1044544652239215_2960211617151187393_n 10941511_1044545552239125_5866887060160562491_n 10941128_1044545475572466_9126375999653272832_n 10933879_1044545195572494_8786093802984489018_n 10933872_1044545508905796_344706946385790319_n 10690063_1044545068905840_2107069984969866405_n 10685405_1044545808905766_123100814777564742_n 10550958_1044545218905825_2706608675996438553_n 10947230_1044544832239197_2198225543566364832_n 10537892_1044544662239214_130605591950053939_n 10502084_1044545428905804_3730039277410658577_n 10443647_1044544888905858_1740394821187377630_n 10433797_1044544488905898_574613532735352627_n 10426090_1044545165572497_5096192227518416717_n 10422136_1044545235572490_2686333445472657503_n 10410837_1044544945572519_6401407926762387490_n 10410348_1044545575572456_4179347314100151179_n 10420047_1044545928905754_1832548983047755920_n 10408778_1044544762239204_4048748029739333087_n 10408485_1044545175572496_7909522277753982675_n 10014668_1044545275572486_472497021103185746_n 1926637_1044544715572542_7281941649534335535_n 1654402_1044545018905845_2915333149773750994_n 1509844_1044544742239206_6260338848872322395_n 1012983_1044544985572515_8768331132328753192_n 66189_1044545092239171_1357202303334483726_n 15928_1044545918905755_5886564520980156621_n 1012983_1044544588905888_5638547904224652504_n 10801767_1044545635572450_3079211843410487425_n

WE ARE READY FOR YOU: TAKE A BITE OUT OF CANCER IS ON!!!

WE HAVE A FUN FILLED EVENING PLANNED SO I HOPE YOU CA2015 auction promorN JOIN US.

LET’S FACE IT, WHERE CAN YOU GO, PAY $40 AND HAVE DINNER, WINE, BEER or SODA, COFFEE AND GREEK DESSERTS…PLUS MUSIC, DANCING, VISIT WITH FRIENDS,…AND HAVE AN OPPORTUNITY TO WIN SOME FABULOUS PRIZES???

WAIT UNTIL YOU SEE OUR AUCTION ITEMS!

HERE ARE A SAMPLE OF ITEMS WE ARE AUCTIONING OFF: VACATION DESTINATIONS, LOGE SEATING, JEWELRY, AUTOGRAPHED FOOTBALLS, BASEBALLS, AND BASKETBALLS ALL FROM CLEVELAND!!!  HAIR AND SPA TREATMENTS, ART WORK, GIFT CARDS TO A NIGHT ON THE TOWN, YOGA, PERSONAL TRAINERS, ICE CREAM, GOLF, THEATER TICKETS,  COSMETICS TO BEAUTIFY AND MAKE YOU LOOK YOUNGER:)

SO JOIN US THIS SATURDAY, JANUARY 24th, 2015.

7 PM – 11:30 PM

 ST. DEMETRIOS CULTURAL CENTER

22909 CENTER RIDGE ROAD

ROCKY RIVER, OHIO 44116.

ALL PROCEEDS GO TO PAYA* CANCER RESEARCH, FUTURE PAYA CANCER RESEARCHERS, PAYA CANCER PATIENTS AND THEIR FAMILIES.

WE ARE A VOLUNTEER ORGANIZATION SO PLEASE JOIN US THIS SATURDAY!

QUESTIONS? CONTACT ANGIE AT: INFO@FIGHTCONQUERCURE.COM.

ORDER TICKETS ON-LINE…ON OUR WEBSITE: FIGHTCONQUERCURE.ORG

EACH YEAR 70K YOUNG ADULTS ARE DIAGNOSED WITH CANCER.

EVERY DAY 23 CHILDREN UNDER 18 YRS ARE DIAGNOSED WITH CANCER.

AREN’T YOU TIRED OF HEARING THESE HORRID STATISTICS?

PLEASE HELP US AS WE FIGHT! CONQUER! CURE!! CANCER!!!

*PAYA  cancer patients = pediatric, adolescent, and young adults = too many young people suffering = we need better research to treat and cure!

Stuart Scott

 

 

I must confess that I am not an avid sports enthusiast. However when I learned of the passing of Stuart Scott I immediately wanted to share some thoughts.

espn_e_sscott_203x114Stuart’s war against cancer represents that battle so many of our young people fight each day. Stuart was diagnosed at the age of 41 years… which in case you didn’t already notice…is pretty young. His passing reminded me of why we do what we do..that is to help others fight the cancer war through supporting AYA CANCER RESEARCH and creating AWARENESS that CANCER is a disease that crosses all ages, social and ethnic groups…and needs to be stopped!

Good people die from cancer every day. Don’t you think it is time for us to find a CURE?

In closing I would like to share a quote from Stuart Scott:

“When you die, it does not mean that you lose to cancer.

You beat cancer by how you live,

why you live,

and in the manner in which you live.”

Have a Wonderful Holiday!

The Steven G AYA Cancer Research Fund would like to wish our supporters a wonderful Holiday Season. Take time to give thanks for all that is good in the world. Hug your family and show them you care.

Peace on Earth and Good Will Towards All Men and Women!

Christmas-Candle-and-Rose

SEE YOU IN 2015!

CRITICAL MASS CONFERENCE 2014 – why we do what we do

I had the pleasure of attending the Critical Mass Conference in Denver two weeks ago. The conference was fantastic!!! There’s nothing like being with a group of like minded people so dedicated to finding better ways to treat and cure AYA Cancer!!

Oncologists, nurses, social scientists and workers all banded together with a common goal: Collaborate to Cure Cancer!!

Many of the conference leaders are YA Cancer survivors who know first hand what it means to be part of a unique group of individuals considered to be “the least likely to survive their cancer.”

Like last year, the Steven G AYA Cancer Research Fund awarded six individuals for their work in either Innovative Scientific Research or Innovative Service and Programs.

Critical Mass Conference 2014, Denver, CO  SGAYA Cancer Poster Session Awardees

Critical Mass Conference 2014, Denver, CO
SGAYA Cancer Poster Session Awardees

 

 

 

 

 

 

 

 

 

 

Their names are below listed as follows:

Innovative Research and Clinical Trials

First Place – $500 Award

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.

Second Place – $300 Award

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

Third Place – $150 Award

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

Innovative Programs and Services Awards

 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

Second Place Award – $300

Author Name: Karen Fasciano, Psy.D.

Abstract Title: Development of a web-based support program for caregivers of young adults coping with cancer.

Third Place Award – $150

Author Name: Julie Kinamore

Abstract Title: An Outdoor Adventure Program for Young Adults with Cancer: Positive Effects on Body Image and Psychosocial Functioning

Congratulations to all these very talented individuals!

Last, but not least!!!

I wanted to share an email from one of last years’ recipients.

Dr. Catherine Fiona MacPherson’s  (in photo below) research  study is titled:

 

criticalmassfiona

Link to the RESEARCH ARTICLE: feasibility acceptability of an iPad app to explore symptom clusters in AYAs with cancer_Pediatr Blood Cancer_2014

 The Computerized Symptom Capture Tool (C-SCAT): A Novel Approach to Exploring Symptoms and Symptom Clusters.

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.”

-we are working hard to help others

find a better way to treat and cure aya cancer!!!-

fight! conquer!! cure!!! 


SEE YOU JANUARY 24TH, 201

 

fundraiserflyer2014-2015