Author Archive

EARTHFARE and SGAYA Partners for WELLNESS!

Patricia O'Donnell, Community Relations Coordinator for EarthFare Supermarket in Fairview Park, Ohio.

Patricia O’Donnell, Community Relations Coordinator

EarthFare Supermarket, Fairview Park, Ohio

Thank you EarthFare Supermarket for joining forces with the SGAYA Cancer Research Fund to provide Healthy Foods to Pediatric, Adolescent and Young Adult Cancer Patients and their Families.

Research has shown that PAYA Cancer Patients have a better chance of surviving their cancer and remaining healthy if they are well nourished. This means that the majority of their meals should be fresh vegetables, legumes and fruits!!

 

Part of our mission includes helping  patients survive their cancer through education.  You can imagine our satisfaction knowing that dads and moms, as well as young patients, are enjoying refreshing smoothies. 

This past Friday was Green Smoothie day, in honor of St. Patrick’s Day. 

Stephanie Jordan, Child life Worker, whipped up Green Smoothies that contained fresh pineapple, bananas, spinach, coconut water, and yogurt. 

Everyone (parents and children) agreed that despite the undesirable greenish hue of the beverage…it was quite tasty!!! One dad was reluctant…but after he took a sip…well what can I say…he really enjoyed the healthy drink!

Smoothie Fridays not only provide a healthy introduction to refreshing beverages, but a welcomed distraction to the often stressful days parents and children encounter on Rainbow 2.

Let’s face it CANCER STINKS!

BUT… One adolescent teen stated “wow I love these fruits!!! I am going to order fresh fruit everyday!!!”…when I asked her if I could quote her she said “SURE!!!”

AH, SUCH GRATIFICATION!!!

You can expect to hear more about our WELLNESS PROGRAM in the future. In the meantime, know that every Friday something HEALTHY is happening courtesy of EarthFare and the Steven G AYA Cancer Research Fund. 

FIGHT! CONQUER! CURE!!!

Stupid Cancer’s OMG It’s Cancer Conference 2014

Hello Friends,

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

Stupid Cancer

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!!!

Angie

176840.3060190

 

Mesothelioma and The Family

Our Friends from The Pleural Mesothelioma Center asked if we would be willing to share information about Pleural Mesothelioma. This type of cancer is not common among children and young adults, however, when one member of the family has been exposed to asbestos the rest of the family (including children) are at risk.

Please take a moment to read the article and feel free to contact them at

PleuralMesothelioma.com for questions.

Thank you.

Angie

====

The Effect of a Mesothelioma Diagnosis on Your Family

Receiving a mesothelioma diagnosis can come with a string of emotions, and it will be a difficult and confusing time for family and loved ones, especially teens and young adults.

Mesothelioma is a rare, asbestos-related cancer that develops in the thin lining of the lungs, heart or abdominal cavity and is primarily caused by the persistent inhalation of asbestos fibers. These fibers can become lodged in the body, causing a tumor to develop decades after the initial exposure to asbestos.

Anyone who has been exposed to asbestos is at risk for developing mesothelioma or related conditions. Teens and young adults are at low risk if they live in a home or attend a school that was built before the 1980s, which may contain asbestos materials; however, men between the ages of 50 and 70 are most likely to develop mesothelioma from occupational exposure.

Family members of workers who are exposed on the job are also at risk, as asbestos fibers can be carried home on clothing or the skin, or in the hair.

Mesothelioma is an aggressive type of cancer with an unfavorable prognosis and is often associated with debilitating symptoms. As with other cancers, there is no known cure for mesothelioma, but there are treatment options such as chemotherapy, surgery or radiation. These options largely depend on the stage of the cancer and other factors. Early diagnosis is important in extending a patient’s life. If caught in its later stages, treatment options may be limited.

There are a lot of emotions involved in such a diagnosis, and it can be hard to watch a loved one go through such a trying time in their life. Sometimes loved ones can feel helpless or that they can’t do enough, which can lead to stress and other emotions that may interfere with their relationship with their loved one.

Coping With a Mesothelioma Diagnosis in the Family

Not only are emotions compromised when a parent or grandparent is diagnosed with mesothelioma, but daily life will also change. Mesothelioma can lead to chronic pain, shortness of breath and significant weight loss. All of these factors can contribute to difficulty in completing daily routines and may even lead to depression.

Just like patients have to learn to cope with their illness, their children and grandchildren also will need to learn to adjust. This may mean helping their loved one complete daily tasks or run errands that were not previously their responsibility.

It is important for teens and young adults to keep an ongoing relationship with their loved one who has been diagnosed with mesothelioma. Simple, daily conversations can serve as a reminder that the diagnosis does not define the relationship and that there is still hope.

Resources for Family Members

There are a number of resources available for mesothelioma patients and their families.

  • Support Groups. Support is especially important for anyone whose family member has been diagnosed with mesothelioma. Support groups can provide tips and stories from others going through a similar situation and may be able to give young adults some guidance.

  • Therapy. If a young adult needs more support, a therapist or counselor can help sort out emotions that come with a mesothelioma diagnosis in the family.

  • Information. The more patients and their families know about mesothelioma, the better. Many cancer and mesothelioma groups provide free informational packets that include information that can help young adults cope with a parent or grandparent’s diagnosis.

When a parent or grandparent is diagnosed with any type of cancer, it can affect emotions and daily life. The most important thing is for teens or young adults to seek help or guidance and know that they are not alone.

Fight Conquer Cure Image (1)

NO WINTER BLUES..WE KICKED CANCER’S BUTT AND PURPLE Smoothie Day was a HIT!!!

It’s not everyday I can report on two successful events in one week…but here it is!

A BIG THANK YOU to our SUPPORTERS who helped us Take a BITE out of AYA Cancer  at our Fundraiser last week!!! Despite the snow and cold (old man winter did a number on us) folks were determined to inform cancer that NOTHING IS GOING TO STOP THEM FROM FIGHTING CANCER!!!

Many thanks to our SPONSORS, DONORS, FUNDRAISING COMMITTEE, VOLUNTEERS, BAKERS, PHOTOGRAPHER, AND TECH SUPPORT STAFF.

Our Event Sponsors were:

CATANZARITE FAMILY FOUNDATION

LOU AND ANN FRANGOS

THE RIPICH FAMILY

CHARLES AND CHARLENE FOWLER

JIM DOYLE REALTY

MCGLADRY, LLP

GROSS BUILDERS

PORTER WRIGHT

WILLIAM & SUSAN WEIR

PURE BARRE WESTLAKE – LORI STANDON

TOME & LESLIE BASISTA

BELLWETHER ENTERPRISE

We will post all the names of our many wonderful donors in our Event Power Point very soon. Our donors enabled us to have some fantastic and unique Silent and Chinese Auction items:)

Thank you to our Fundraising committee:

Tina Poulos, Chair

Elaine & Claude Campbell

Jean & Nick Hillman

Mary & Jim Diamond

Polly & Tim Furey

Betty & John Poulos

Toula & Nick Pyros

Helene & Anthony Santerelli

Lee Santerelli

Myrta Holden

Elpida Kosmidis

Fr. James & Presbytera Goldie Doukas

Nick Giallourakis

Becky Giallourakis

We couldn’t have done it without you!!!!!

 

fatherjim

Fr. James Doukas, Polly Furey, Helene Santerelli, Goldie Doukas, and Ang===============================

nickycam

MC Nick Giallourakis and Camilla Cullis

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vera

Vera Karydes, Alan & Aggie Arabian, Toula Pyros

pollytim

CJ Mosure, Jim Diamond, Stephanie Missirlis, Polly & Tim Furey

 

 
 
 
more photos will be posted very soon!
 
 

 

 

 

 

 

 

 

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purple smoothie little health nut

PURPLE SMOOTHIE DAY

 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.

Thanks to VitaMix of Cleveland, we were able to blend blueberries, bananas, and orange juice into a delightful beverage that EVERYONE enjoyed….even children currently receiving  chemotherapy (that destroys ones taste buds)..

When I saw the youngsters enjoy the fruit filled smoothie and smile…my heart soared!!!

Special thanks to Child Life Worker Stephanie Jordan for printing off the recipes to distribute to families and making the event HAPPEN!!! Coordination of time and space is required to make such a simple event successful!!!

I look forward to our next WELLNESS EVENT… Healthy Snack Day!!

purple smoothy 2purple smoothy day

Stephanie and a helpful Volunteer prepared

 smoothies

Thanks to

Stephanie for letting me get in on

the fun!!!

Take A BITE out of AYA CANCER!!!

 

Hello Friends,

Our 5th Annual fundraiser will take place this Saturday, January 25th, 2014.

Tickets are being sold at a rapid pace, so if you are thinking about attending may I suggest you visit our website (www.fightconquercure.org) or email me (angie@fightconquercure.com) to make your purchase.

Our wonderful committee has been working diligently to make this event the best ever!!!

Our Silent and Chinese Auction Items include (but are not limited to the following):

Vacation Get-Away Packages!

Golf Packages!

Autographed Sports Items!

   (including Nick Swisher autographed        baseball and  bat that includes his named  engraved and signed!!!)

Pure Barre Workout Gift Basket!

Spa Items  From Charles Scott and Fusions Salons!

Get Fit with  Jeremy Dancy of Official Fitness Pro!

Loge Seating for Cleveland Sporting Events!

Art Work!

Restaurant Gift Certificates!!

Chocolates!!!

and more!!!

What a great way to help us Fight Conquer Cure Cancer!!!

See you soon!!!

Angie

event-logo (1)

MEET STEVE G AT THE BARRE: PURE BARRE

Hello all,

Don’t forget this Saturday,

January 18th at noon or

1:15pm for the PURE BARRE –

Pure Give Class!!!

Proceeds will go towards the Steven G AYA Cancer Research Fund!

Support AYA Cancer Research, Education and Advocacy and GET INTO SHAPE!!!

Also, Steven G will be joining us at 1:00 pm to thank all of you for supporting our cause!

you can register on-line at

www.purebarre.com/oh-westlake

or

email at westlake@purebarre.com

Thanks for helping us

FIGHTCONQUERCURE

Cancer!!!

 

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SHARING HOPE

Hope photo JW

Last year, I asked my friend Jean Wendland to paint a picture that represented her definition of HOPE. After some time she created a lovely painting of a flower emerging through pavement.

I was so pleased with the painting that I wanted to dedicate this blog post to her creation.

In the world of cancer there is nothing more precious than possessing the feeling of HOPE. Where would we be without HOPE?

Over the last eight years  I have spent a good deal of time meeting and reading about young people fighting cancer. Each story is filled with moments of despair and courage.

Regardless of the outcome, however, there was always HOPE!

I believe you will agree that as Cancer Advocates we have a responsibility to believe in and find ways to create HOPE.

To promote. To encourage. To support. To love.

If a seed can germinate in a hostile environment and become a beautiful flower, then why in the world would creating HOPE be an impossibility?

I trust that you will find a way to SHARE HOPE with others.

Without HOPE we are nothing.

 

 

 

GET THE PURE BARRE (L)EDGE AND SUPPORT AYA CANCER

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HI FRIENDS!

LORI STANDON, OWNER

OF

PURE BARRE AVON/WESTLAKE AND ROCKY RIVER, OHIO

IS

DEMONSTRATING

HER SUPPORT

OF

 THE STEVEN G AYA CANCER RESEARCH FUND

BY

DESIGNATING US AS

CHARITY OF THE MONTH FOR

JANUARY, 2014. 

YOU

HAVE THE OPPORTUNITY

TO HAVE THE

WORKOUT OF YOUR LIFE

AND

SUPPORT

AYA CANCER RESEARCH, AWARENESS AND EDUCATION.

SO

SIGN UP TO PARTICIPATE IN THE

PURE GIVE WORKOUT

ON

SATURDAY, JANUARY 18TH.

THE WORK OUT SESSIONS WILL TAKE PLACE AT:

12:15 PM

OR

1:00 PM

TO SIGN UP PLEASE VISIT HER WEBSITE AT

WWW.PUREBARRE.COM/WESTLAKE-OH

OR 

EMAIL LORI AT

WESTLAKE@PUREBARRE.COM

SIGN UP IS FREE 

BUT LORI SUGGESTS A DONATION OF $20 AT THE DOOR.

ALL PROCEEDS GO TO

THE STEVEN G AYA CANCER RESEARCH FUND’S

RESEARCH

EDUCATION AND AWARENESS PROGRAMS.

PLEASE JOIN ME

IN THANKING LORI

FOR HER GRACIOUSNESS

IN HELPING THE CAUSE!

REMEMBER…

WE WILL NOT REST UNTIL THERE IS CURE!!!

FIGHT! CONQUER! CURE!!!

Christmas: Giving Thanks and Remembering

Christmas-Candle-and-Rose

I tend to get a little weepy during the Christmas Holidays and it’s not because of the need to make everything “all shiny and bright”.

I thank God everyday for the health of my husband and children.

Each day is a Blessing.

I also, however, become nostalgic for my relatives and friends who have gone to sit at a more Heavenly Christmas Table than the one I will set on December 25th.

I know many of you are missing your loved ones right now.

So this my wish to you:

May your heart

be filled with

gentle

loving memories

that enable you to carry-on.

May you experience

God’s

Presence

Peace

and

Love

during this Holiday Season.

Merry Christmas!

The Giallourakis Family

Research! Research! Research! = $$$$$$

This blog reviews the recently passed Kids First Research Act of 2013 and the impact of limited research dollars on places like Huang lab.

 

The Kids First Research Act of 2013 (H.R. 2019)

Description: The presidential candidates do not use the funds set aside from the income tax option because they find it to be too restrictive for campaigning. HR2019 Gabriella Miller Kids First Research Act of 2013 eliminates taxpayer financing of presidential campaigns and reprograms the savings to provide for a 10-year pediatric research initiative through the Common Fund administered by the National Institutes of Health.

HR2019 Gabriella Miller Kids First Research Act calls for $126 million over a ten year period to increase research for all types of kid’s diseases, cancer, autism, diabetes, and more. For details visit: http://www.gpo.gov/fdsys/pkg/BILLS-113hr2019ih/pdf/BILLS-113hr2019ih.pdf

Kids First Research Act of 2013 – Amends the Internal Revenue Code to terminate: (1) the taxpayer election to designate $3 of income tax liability for financing of presidential election campaigns, (2) the Presidential Election Campaign Fund, and (3) the Presidential Primary Matching Payment Account.

Redesignates the Presidential Election Campaign Fund as the 10-Year Pediatric Research Initiative Fund. Makes amounts in the Fund available only for allocation to national research institutes and national centers through the Common Fund for making grants for pediatric research under this Act. Requires deposit into the Treasury general fund of any amounts in the Pediatric Research Initiative Fund that remain unobligated on October 1, 2024.

For more information visit: http://4sqclobberscancer.com/on-capital-hill/hr2019/ for more about the Bill and its History.

Remember:

One in every 330 children in the United States develops cancer before the age of nineteen.

Each school day, enough children are diagnosed with cancer to empty two classrooms.

Depending on the type of cancer and the development upon diagnosis, approximately 2,300 children will die from cancer in any given year.

The number of children diagnosed with cancer in the U.S. each year puts more potential years of life at risk than any single type of adult cancer.

Cancer remains the number one disease killer of America’s children.

There are more than 360,000 childhood cancer survivors of all ages in the United States.

Unfortunately, 74% of childhood cancer survivors have chronic illnesses, and some 40% of childhood cancer survivors have severe illnesses or die from such illnesses.

Survivors are at significant risk for secondary cancers later in life.

Current cancer treatments can affect a child’s growth, fertility, and endocrine system.

Child survivors may be permanently immunologically suppressed.

Radiation therapy to a child’s brain can significantly damage cognitive function, especially if given at a very young age.

While currently there is very little in terms of “safe and effective” cures for any particular type of childhood cancer, the underlying genetics of the disease and recent research breakthroughs make such treatments foreseeable.

Thank your congressional leaders for supporting the KIDS FIRST RESEARCH ACT OF 2013 (H.R. 2019)

 

SO…HOW DOES FUNDING REACH PLACES LIKE HUANG LAB??

 

With the passage of the Kids First Research Act of 2013 it is appropriate to provide you with an example of how the shortage of funding and grants from places like the National Institute of Health and the National Cancer Institute impact local research efforts to conquer cancer. The example is through our collegues at Dr. Alex Huang’s Laboratory at Case Western Reserve Medical School in Cleveland, Ohio.

We (board members and high school students Tim Chrisman and Cassis Packis) visited the Lab on Tuesday, December 3rd.

Dr Huang graciously greeted us and gave a tour around the Research Laboratory where important  PAYA Cancer Research is being conducted.

The dedicated researchers are working on several projects that focus on finding ways to stop cancer in its tracks! Not being a researcher I cannot do justice to the important work they are doing. However, by reading previous blogs you will find some excellent descriptions of the successes in the war on cancer. In addition to our visit we learned about the time and committment required by oncology researchers. In addition we learned about the limited funding and ever depleting numbers of medical students and scientistS who select not to enter the field of oncology research as a result of limited funding.

I found it disturbing to learn that PAYA Oncology Researchers are the LEAST awarded among researchers. And, their salaries are dependent on contributions from private donors and research grants.  In addition, these grants are being awarded less frequently.

In the past, funding from institutions like the National Institutes of Health and National Cancer Institute were awarded to 1 out of 6 applicants. Today, however,  these same institutions are only award 1 out of 16 applicants! Sadly, there are less and less resources available. It is very disheartening to know that the NIH and NCI does not prioritize PAYA cancer at the top of their funding agenda.

Contrary to public opinion, Huang Lab does not receive financial support from local hospitals.

Huang Lab does receive important funding from generous non-profit organizations (see HuangLab.com for more information).

Grant proposals must be written two years in advance in order to secure annual funding for staff and supplies.

FINDING BETTER WAYS TO  TREAT AND CURE CANCER requires much administrative work, dedication, and  highly educated individuals willing to sacrifice  personal and family time as well as monetary gain…NEED I SAY MORE?

SO FRIENDS, please continue to share our blogs, write to Congressional Leaders to keep the funding coming, and, like us,

DO NOT REST UNTIL THERE IS A CURE!!!!!

FIGHT!!! CONQUER!!! CURE!!!

Huang Lab Team and Friends

Huang Lab Team and Friends

 

Dr. Huang leading a discussion about the many research projects begin conducted in the laboratory.

Dr. Huang leading a discussion about the many research projects begin conducted in the laboratory.