Author Archive

CANCERCON 2016 – BY DAN DEAN

CancerCon is a set of two paradoxes:

the conference operates likes a living,

breathing pair of theater masks

and you talk more than normal,

but need fewer words to do so.

If you’re not familiar with it, CancerCon is a three-day cancer jam held in Denver, bringing together over 600 adolescent and young adult (AYA) fighters and survivors from around the country to attend seminars and network with those who share their same diagnosis. The hallways, breakout rooms and lobby buzz with the sounds of old friends catching up and new ones forming bonds that circumvent time and geography.

At times, the conference can feel overwhelming: connections are being made and rekindled, helpful information and stories are swapped between patients and survivors, attendees are dealing with aspects of their recovery for the first time, while also finding the community and resources to continue their healing. Emotions run high and deep.

Through every encounter, whether shared in joy or sadness, is a sense of relief. For the first time, many patients and survivors don’t have to give their 15-minute cancer back story. There’s not the urge or need to explain their journey that people on the outside don’t quite understand. Over time, cancer fighters and survivors become practiced storytellers, explaining gaps in employment and dating and taking outsiders on a CliffsNotes tour of their treatment and recovery.

In that sense, AYAs can feel alone, separated from their peer group and friends at home. When social dynamics change so starkly into the ascension of adulthood, throwing a cancer diagnosis in the mix can feel isolating and confusing. The same challenges that cause a person to feel alienated in one circle are embraced and accepted at CancerCon. No longer is the cancer preamble needed.

Instead, patients and survivors jump into deep conversations right away, much in the same way two old friends catch up instantaneously. About midway through a conversation you realize how amazing it is to form a bond with someone you met only 20 minutes ago who lives seven states away.

There’s no way to neatly encapsulate the range of emotions at CancerCon. It’s unique to both laugh and cry about the same experience. When you say the three words, “I had cancer,” everyone gets you. And those things are worth the trip to Denver.

Dan Dean

May 25th, 2016

Dan is an actor, writer, advocate, survivor and we are lucky to have him as a board member.

You can check out his blog at: http://www.cancer-youngadult.org

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LET’S SAVE A LIFE – BMT DRIVE APRIL 17TH

Hello friends,

Most of you are familiar with Steve’s journey through cancer and the fact that he had a LIFE SAVING BONE MARROW TRANSPLANT. And many of you did register with the Be The Match Foundation in hopes of helping Steven.

BUT SOME OF YOU DIDN’T….PROBABLY BECAUSE YOU WERE TOO YOUNG or too busy…

SO IF YOU ARE 18 – 44 YEARS OLD… HERE IS YOUR CHANCE TO SAVE A LIFE!!!

Our friend Joanne Filina was first diagnosed at 35 years old with Leukemia. She went into remission but it came back a second time. She is in remission again. BUT her doctors are telling her that it might come back again…and soon.

PRETTY FRIGHTENING DON’T YOU THINK?

So here is your chance to help her and others like Joanne.

JOIN THE REGISTRY.

IF YOU ARE A MATCH YOU WILL BE NOTIFIED BY TELEPHONE.

IF YOU ARE CONTACTED…PLEASE SAY YES TO BEING FURTHER TESTED.

AND THEN IF YOU ARE STILL A MATCH YOU JUST MIGHT GET THE CHANCE TO SAVE A LIFE.

YOU WILL BE INCONVENIENCED FOR A COUPLE OF DAYS. AND THAT’S IT!!!

IF YOU NEED MORE CONVINCING TO HELP OUT…THEN HERE IS A QUOTE FROM STEVEN’S DONOR:

“I am honored to have an opportunity to help save a life. When I was first notified that I was a match I didn’t tell anyone until it was confirmed I am a match for someone in need. 

So I mentioned it to my wife…she didn’t hesitate for a moment. I am a parent just like you with three boys… and I couldn’t imagine someone turning down a boy with a full life in front of him….Please know this, you, your husband and your son Steven do not owe me a single thing no even a debt of gratitude, what I did was for myself, and the act in itself was self gratifying. I think you all are great people, and if anything, it is I who owes you and not the other way around. Please keep doing what you are doing in helping other cancer patients and may God help and Bless you. 

With warm regards,  A…..” [Note from Angie: I am maintaining our donor’s anonymity because I did not ask him if I could share this message on the website.]

SO JOIN US 

SUNDAY, APRIL 17TH, 2016 – NOON – 4:00 PM

ST. DEMETRIOS CULTURAL CENTER – FELLOWSHIP ROOM

22909 CENTER RIDGE ROAD

ROCKY RIVER, OHIO 44116

THERE WILL BE A RAFFLE TO RAISE FUNDS FOR “BE THE MATCH”

REFRESHMENTS WILL ALSO BE AVAILABLE.

QUESTIONS:

CONTACT ANGIE: Angie@fightconquercure.com

OR TONYA DAVIS

tdavis2@nmdp.org

for more information

or to make a donation visit:

http:www.bethematchfoundation.org/goto/jojofilina

or to download more information

Joanne Filina Event Flier (1)2016 FAQ and Responses

 

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YOU DID IT!!!

thanku low res

 

Dear Friends,

Thank you for your generous support. Our event: TAKE A BITE OUT OF AYA CANCER was a HIT!!! We raised over $33,000!!! OUR GREATEST AMOUNT EVER!!

-SPECIAL THANKS TO-

OUR SPONSORS

Michael Catanzarite – Manual & Heidi Glynias – David & Dena Grubb – George Giallourakis – Lou & Ann Frangos – Dr. & Mrs Antonios Paras – Philoptochos Society of St. Demetrios Greek Orthodox Church – Bryan & Deborah Rogan – Bellwether Enterprise – James Doyle – John & Judith Kackloudis – George & Laura Kappos – William Weir

-OUR DONORS-

Michaeline & David Hillie – George & Laura Kappos – Paul Porisch –Anonymous – Scott & Kimberly Williams – James Doyle – Heidi Glynias – Dr Mark Cain & Dr. Catherine Shaw – Leslie Orendorf – Evanthia Pallam – Bob & Kathy Steadley – Maribeth Famiano – Alex & Ricka Jelepis – Irene Pontikos – Moira Osborne – Allen & Agnes Arabian – Deborah Webster – Tony & Sue George – Marti & Susan Clancy – Ray Fogg Jr. – Linda & Manuel Glynias – Joseph Grace – Richard & Anna Warren – Karen & John Kackloudis – Thomas & Leslie Basista – Dr. Jeffery Auletta –  Michael Kriston -Don & Cindy Sears – Jock Callander – Lynne Varney – Gayle Knapp – Shannon Viets – Elyce Wozniak – William Weir – Jeremy Dancy – Diane Mares – Jim Voiklis – Lou Frangos – Shannon Fitzgerald – Peter Restifo – John & Betty Poulos – Elaine & Claude Campbell – Toula Pyros – Sue Giallourakis – Mary Diamond – Michelles – Linda Damiani – Jean & Nick Hillman – Costa & Maria Mougianis – Anthony Santarelli – Gerald Largent – Kriaris Family – Cleveland Public Theater – Hot Diggity Dog – Jan Spooner – Helene & Eleni Santarelli – Megan Diamond – Stephanie Zavatchen – Dan Giallourakis – Tim & Barb Hughes – Khaled Fawzy – Cheryl & Angelo Mango – 

-CORPORATE SPONSORS-

CR Construction Company – Hemingway Development – Kretz Family Foundation – Bellwether Enterprise – Darice Inc. – St. Demetrios Philoptochos – Genjed Inc. – Jennings Freeway Industrial Park – Charles Scott Salons, Inc – Red Tail Golf Club – #1 Express Care Wash -Porter Wright Law Firm – Official FitnessPro

Lake Erie Monsters – Rob & Trish Risman – Cleveland MetroParks – Charles Scott Salon & Spas – L’Oreal – Lolly the Trolly – Cleveland Orchestra – Red Tail Golf Club – Wine Styles – Fusions Salon – Dick’s Sporting Goods – Walmart – Giant Eagle – Mitchell’s Ice Cream – Oliver & Henry’s Pets – Inner Bliss Yoga Studio – Spevock Nautical Lanes – Fra Angelica – Walmart – White Oaks – Kathy’s Kolacke’s – Hospitality Management – Mediterranean Imported Foods – St. Panteleimon Ministry – Cleveland Clinic Aesthetics – Cleveland Browns – Cleveland Cavs – Fairview Lanes

-WELLNESS PACKAGE CONTRIBUTORS-

James & Connie Giallourakis – Dave Box & Sarah Cachat – Tony & Jean Chiviles and Family – Mike Cachat & Melanie Menendez

-OUR PHOTOGRAPHER-

Z PHOTOGRAPHY STUDIOS

KARA ZOLLOS

-OUR CATERER-

COYNE CATERING

TRISH & JIM COYNE

-OUR DJ-

GEORGE GOUNTIS

-OUR SPEAKER-

AMELIA BAFFA, RN, MSN

-OUR ENERGIZED COMMITTEE-

Tina Poulos, Chair

Nick Giallourakis, MC

Jean & Nick Hillman – Elaine & Claude Campbell – Mary & Jim Diamond – Toula & Nick Pyros –  Jan Spooner –  Elpida & Peter Kosmidis – Betty & John Poulos – Becky Giallourakis – Anthony & Helene Santarelli – Lee Santarelli – Fr. James & Presbytera Goldie Doukas – Donna Vassos – Dan Dean – Acia Shaheen

CJ Mosure – WebMaster

-OUR  WONDERFUL VOLUNTEERS-

   Camilla Giallourakis, Catherine Giallourakis, Dan Dean, Shannon FitzGerald,  Irene Steffas, Helene Santarelli, Melanie Baur, Sophia Asmis, Mary Diamond, Jean Hillman, Steve Alex, Maria Alex, Phil & Alysse Giallourakis, Myrta Holden, Edna Oroczo, Nick Kariotakis, Becky Giallourakis, Elpida Kosmidis, Gerald Largent, Jan Spooner, Betty & John Poulos and Luke Morrison

SGAYA BOARD MEMBERS

Mary & Jim Diamond

Shannon FitzGerald

Dan Dean

Harry Giallourakis

Angie Giallourakis

Becky Giallourakis

Phil Giallourakis

Jean Hillman – Fundraising

Alysse Shaheen Giallourakis – Legal Advisor

Dr. Jeffery Auletta – Medical Advisor

Steven Giallourakis – The reason we are here

FIGHT! CONQUER! CURE!!!

THANK YOU!!!

Harry & Angie Giallourakis

 

ARE YOU COMING? WE NEED YOUR SUPPORT!

Hello Friends,

It is not in my nature to be bossy (ha) or demanding (double ha) but we are getting down to the wire. Our annual fundraiser TAKE A BITE OUT OF CANCER – will take place in  TWO WEEKS!!!

Uncle_Sam_(pointing_finger)

Please remember that your donations go directly to support local PAYA (pediatric, adolescent and young adult) cancer research at Case Medical School’s Huang PAYA Cancer Research Lab (www.huanglab.com),  and adolescent and young adult cancer patients and families right here is NE Ohio!!!

This year we distributed over 40 Wellness bags (which cost approximately $150 each) to YA Cancer Patients while in Treatment

We supplied fresh fruit and yogurt for Smoothie Day (bi-weekly) for young cancer patients while in treatment.

We supplied products for “BEAUTY DAY” which uplifted the morale of moms and patients by providing make-up and beauty hints, hand massages and manicures (I never thought massaging another’s hands could be so gratifying.)

We sent four young adult patients  from NE Ohio to CANCER CON 2015  in Colorado.

Also, just last week we sent a $250 check to support a dad and young son with cancer to the Annie Appleseed Project Conference. Annie Appleseed focuses on wellness through Integrative Oncology methods. You can visit their website at www.annieappleseedproject.org.

PLEASE HELP US WITH OUR MISSION

WE WILL NOT REST UNTIL THERE IS A CURE!!!

FIGHT! CONQUER! CURE!!!

take a BITE OUT OF CANCER!!

Saturday, January 23rd, 2016

event-logo (1)7 – 11 pm

23023 Center Ridge Road

Rocky River, Ohio 44116

Cost: $40

Can’t attend?

Well, feel free to make a cash donation or donate an auction item. Email me at info@fightconquercure.com for more info:)

Wishing you a Joyous Holiday With Family and Friends

Dear Family and Friends

YOU ARE VERY IMPORTANT!!! WITHOUT YOU WE WOULDN’T EXIST!!!

Through your support the Steven G AYA Cancer Research Fund has reached out and served the pediatric, adolescent and young adult (PAYA) cancer community. We have funded clinicians and researchers in medicine and the social sciences to find better ways to treat and serve PAYA Cancer Patients and Survivors. 

Your financial support sent YA cancer patients to the uplifting and empowering annual Stupid Cancer Conference where young adults interact and learn what it means to be a cancer survivor between the ages of 21-39 years.

Our Wellness Packages have been a hit at Rainbow Babies and Children Hospital, Seidman Cancer Hospital and the Cleveland Clinic. Each newly diagnosed AYA Cancer Patient receives a large canvas bag of materials that encourage and support positive mental and physical health behaviors. Let’s face it these young people need as much support and encouragement as possible!

Our foundation is small but mighty!

THANKS TO YOU!!

We wish you and your families a Merry Christmas, Happy Hanukkah, Joyous Kwanzaa, and a Blessed New Year.Christmas-Candle-and-Rose

Looking forward to seeing you on January 23rd, 2016.

God Bless.

Angie and Harry

Critical Mass Research Poster Awardees

Each year Critical Mass:YA Cancer Alliance, holds an important conference bringing together stakeholders in the field of YA Cancer. Researchers, doctors, nurses, non-profit administrators, survivors and caregivers come together to learn from each other. This year the conference was held in Chicago.

As a Critical Mass partner, and strong advocate for YA Cancer Research, our foundation annually awards researchers in two categories: Innovative Research and Clinical Trials and Innovative Programs and Services. The top three research posters are selected within each category and given a cash award.

We strongly believe that good research is an important step towards finding the best way to cure and treat cancer. FIGHT CONQUER CURE!!

Below are the names of the individuals awarded at the Critical Mass Conference 2015.

Innovative Research                                    Innovative Programs

First Place $500        DEBORAH MOROSINI,MD                       MEGAN BIANCHETTI, MSW

Second Place $300    THERESA KEEGAN, PH.D                         KATHLEEN VILLA, PH.D

Third Place $150        JEANNE ERICKSON, PH.D                       MARIA CABLE, RN

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MARIA CABLE RN Title: “Just In Case”: the Fertility information needs of teenagers and young adults with cancer.

 

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MEGAN BIANCHETTI, MSW Title: Distress in AYAs with Cancer: Components and Covariates

 

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THERESA KEEGAN, PH.D Title: Sociodemographic disparities in survival for adolescents and young adults with cancer differ by health insurance status: a population based-study in California, 2001-2011

 

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JAMES L. BAKER PHARM.D (for Kathleen Villa) Title: A Modeling Analysis of the Risks and Benefits of a Pediatric-Inspired Protocol Compared with a Hyper-CVAD Protocol in the Treatment of Adolescents and Young Adults with Philadelphia-Negative Acute Lymphoblastic Leukemia

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Jeanne Erickson, Ph.D. Title: The Pain Experience of Hospitalized Young Adults with Cancer

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MARK BAILEY PH.D. AND VINCENT MILLER MD (for Deborah Morosini) Title: Comprehensive genomic profiling of sarcomas from 203 adolescents and young adults reveals a distinct spectrum of targetable genomic alterations.

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PAT TAYLOR: Advocate, Parent, and Friend Organization: 3 LITTLE BIRDS 4 LIFE

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CHRISTABEL CHEUNG, MSW: Researcher and Survivor and new friend:) AND HER THERAPY DOG CALVIN.

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HERNAN BARANGAN: Movie Producer, Artist and Survivor (Check out his work on YouTube) Organization: TEEN CANCER AMERICA

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!!!

do you know my rights

Navigating and Advocating for Yourself at School, College, and the Workplace: A Three Part Series

This three part series for Teens, Young Adults and their Caregivers.

SESSION ONE is on RIGHTS AND RESPONSIBILITIES (learn about legal rights and accommodations) and will take place on October 6th, 2015.

SESSION TWO is on THE ART OF ADVOCACY: identifying strategies for building positive relationships with teachers and employers. Session two will take place on October 20th, 2015.

SESSION THREE is on GETTING IT TOGETHER: creating a management system to manage your time and organize your documents. Session Three will take place on November 3rd, 2015.

WHERE:

Rainbow, Babies & Children’s Hospital: Pediatric Amphitheatre (RBC 1231)

11100 Euclid Ave, Cleveland, OHio 44016

TIME:

6 PM – 7:30 PM

SPEAKER:

Katie Wetherbee MA.Ed.

Katie is an experienced educational consultant who specializes in teens and young adults with cancer and other chronic medical issues.

REGISTRATION REQUIRED

PLEASE CONTACT AMELIA BAFFA @ 216-844-1969
THIS EVENT IS FREE OF CHARGE

THE EVENT WAS MADE POSSIBLE BY THE STEVEN G. AYA CANCER RESEARCH FUND

Please click on the link below for the Program Flyer

 

Navigating and ADV_Oct2015 AYA

ADA accessibility

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