Advocacy

TEAM RAINBOW LOSES HAIR FOR CHILDHOOD CANCER RESEARCH!!!

We are so proud of our friends at Rainbow Babies and Childrens’ Hospital in Cleveland! Last week TEAM RAINBOW had a “hair raising experience”…and helped promote and fund CHILDHOOD CANCER RESEARCH!!!  Team Rainbow raised over $29,000 for St. Baldrick’s.

Please join me in thanking Dr. Alex Huang, Deborah Barkauskas, David Askew, Jeremy Willets, Ed Greenfield, Chad Wecgraff, Patrick Holzheimer, Christopher Anthony, Seth Karol, Justin Williams, James Beraducci, Kathy Lazar Jason Makii, Marcello Chieppa, Dixon Dorand, Lindsay A., Carolyn Askew, Nedal E., Jay Myers, Matthew Tsao, Nic Peters, Alexander Tong, Graziella Solinas, Anthony Huszcsa, Jeffery Ford, Anthony Serio, James Hegzi, Lindsey Forur, Peter Serios, Corinne Willets, Guiseppe  Bagorda, Tim Guy, Peter de Blank, Elizabeth Pierce, Adam Brumma, Murad Talahma, Judith Weiss, Kathy Griswold, Erica Johnson, Heather Reyes, Peter A., and Nurse Leslie for humbling themselves for the benefit of our children!davidaskewphoto
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CHILDHOOD CANCER ACTION DAY IN WASHINGTON DC!!!

AllianceActionDay2013

SAVE THE DATE –

2013 CHILDHOOD CANCER ACTION DAY IN WASHINGTON, DC

 

Children’s Cause for Cancer Advocacy (CCCA), a member of the Alliance for Childhood Cancer, is pleased to announce that this year’s Childhood Cancer Action Day in Washington, DC is scheduled for June 17-18, 2013.

This year, members of the Alliance for Childhood Cancer will once again host a two-day event that includes issues and advocacy training, and pre-arranged Capitol Hill visits with Congressional representatives and their staff. Our goal: to provide the childhood cancer community – parents, children, and others – with the opportunity to visit Capitol Hill and advocate for the important childhood cancer issues currently before Congress.

Save the Date! Childhood Cancer Action Day in Washington, DC June 17-18, 2013
Monday, June 17, 1:00 – 6:30 p.m. Training and issues presentation
Tuesday, June 18, 8:00 a.m. – 5:00 p.m. Kick-off and Hill visits
Event Participation: Online registration opens Monday, April 15th
Hotel Reservations: A block of rooms has been reserved at the Hotel Residence Inn Old Town South Carlyle, at a room rate of $218 per night. The hotel will accept reservations on a first-come, first-served basis. Ph: 703-549-1155
Transportation to/from Childhood Cancer Action Day is the responsibility of those attending.
More information to follow.
This year, the training will take place at the American Society of Clinical Oncology (ASCO) in Old Town Alexandria, VA. ASCO is located just a few subway stops from Ronald Reagan National Airport, and the hotel is across the street from ASCO. The Alliance will provide buses to and from Capitol Hill on the 18th for Congressional Visits.

About the Alliance for Childhood Cancer

Founded in 2001, the Alliance for Childhood Cancer is a forum of twenty-six national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington, DC to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer.

On behalf of the Children’s Cause for Cancer Advocacy and the Alliance for Childhood Cancer, I look forward to seeing you in Washington, DC in June.

If you have any questions, please contact Maureen Lilly at 202.336.8375 or mlilly@childrenscause.org.

 

FIGHT! CONQUER! CURE!!!

 

(W)IN IT TOGETHER: A MARCH MADNESS FUNDRAISER!!

 

Looking for something to

do on Friday, March 22nd?

march-madness

 

 

 

 

 

 

Itching to watch some College Basketball and perhaps win a prize or two?

Well come to the Market Brewery, 1947 W. 25th Street, Ohio City.

The fun begins at 6:00 pm.

Tickets: $35 Advance and $40 at the Door

Includes food and drink!

$500 in Prizes!!!

Please RSVP to holly@cardiganevents.com with the number of people attending. Check (made out to “In It Together“) can be sent to:

In It  Together 

P.O. Box 771303

Lakewood, Ohio 44107

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In It Together’s Mission is to raise awareness and provide resources for families affected by Pediatric and Adolescent Young Adult Cancers.

Visit our website at: http://www.neo4u.org to learn how you can participate in In It Together’s online March Madness Bracketology!

See you on the 22nd!

The Steven G AYA Cancer Research Fund is in Partnership with In It Together. THE WAY TO MAKE A DIFFERENCE IS THROUGH COLLABORATION AND BY SHARING OF RESOURCES AND INFORMATION! We are IN IT TOGETHER!!!

 

fight! conquer! cure!!!

St Ed’s High School Students Raise $4500 for Childhood Cancer Research

HOW SWEET it is to hear that a group of high school students got together to help raise awareness and funds for Childhood Cancer Research!!! These young men, sophomores, from ST. EDWARD’S HIGH SCHOOL in Cleveland, Ohio banded together, tossed there vanity out the window and shaved their heads for ST. BALDRICK’S an organization dedicated to funding CHILDHOOD CANCER RESEARCH!

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This month keep your eye out for more “HEAD SHAVING EVENTS” in your community. Head Shaving events are a wonderful (and fun) way to call attention to the issues related to PAYA (pediatric adolescent and young adult) CANCER RESEARCH!! For more information about St. Baldrick’s visit www.stbaldricks.org .

REMEMBER,

WE WILL NOT REST UNTIL THERE IS A CURE!

 FIGHT!!! CONQUER!!! CURE!!!

TAKE TWO MINUTES AND SAVE A LIFE!

 

 

Last week’s blog prompted some comments from friends on the importance of joining the bone marrow registry. So I thought I would take a few moments to share some important facts that I found on the BE THE MATCH website www.marrow.org, which I believe you will find most interesting:)

HERE ARE THE FACTS:

1. Donors between the ages of  18 & 44 provide the greatest chance for transplant success.
2.  Patients are most likely to match someone who shares their ancestry.
 3. All donors are carefully prescreened to ensure they are healthy and the procedure is safe for them.
 4. Donors never pay to donate marrow.
 5. Be the Match relies on financial contribution.

Your heritage can make all the difference!

If you are from one of the following communities,

you are especially encouraged to join the

Be The Match Registry or donate umbilical cord blood:

Black and African American

American Indian and Alaska Native

Asian, including South Asian

Native Hawaiian and other Pacific Islander

Hispanic and Latino

Multiple race

SO MY FRIENDS, BE THE ONE TO GIVE HOPE!!!

Join the Be The Match Registry – Take the first step to become a bone marrow donor.

Give a financial contribution – Make transplants a reality for patients.

Stay in touch — Sign up for e-mail on how you can help. (VISIT WWW.MARROW.ORG TO SIGN UP)

Engage your organization – Partner with MARROW.ORG in a program that saves lives.

Host a donor registry drive-

Individuals and families can make a difference.

(Remember, there were several registry drives for Steven over four years ago!!!)

Donate umbilical cord blood at your baby’s birth.

If you or your family member is in need of a BMT please talk with your Physician.

If you wish to hold a BMT Registration Event talk with your Physician, Social Worker or Nurse

to learn if there is a BMT Contact Person affiliated with your hospital or the area in which you live.

What if you are selected to become a donor????? What will you do????

Here is a quote from our donor:

“Please know this… you do not owe me a single thing not even a debt of gratitude…. the act in itself was self gratifying.” 

So my friends, please take our donor’s lead:

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TAKE TWO MINUTES AND SAVE A LIFE!

WOW!!! WHAT A NIGHT!!! FUNDRAISER WAS A SUCCESS!!!

memoryboardHello family and friends,
On Saturday, January 26, 2013 the Steven G AYA Cancer Research Fund hosted its Fourth Annual fundraiser “Take a BITE out of AYA Cancer” at the St. Demetrios Cultural Center in Rocky River, Ohio. Four hundred (I like writing that number out) supporters attended the successful event. Our supporters helped us raise over $28,000 for AYA Cancer Research and Education. This was our best effort ever!!!
In attendance were family, friends, pediatric oncology researchers and AYA Cancer medical team members. We were awestruck by the number of people who helped us Take a BITE out of AYA Cancer.
What a night! Our fundraising team and volunteers, under the fantastic coordinating efforts of Tina Poulos, prepared and attended to the Silent Auction, Chinese raffle, 50/50 raffle, Side Boards, and Lots of Liquor raffle which helped create a constant buzz of anticipation and excitement throughout the evening.
Following the Opening Prayer by Fr. James Doukas, we were entertained by Take Five Jazz Band who serenaded us with their classic jazz sound during dinner. After dinner we had a brief presentation hosted by MC Nick Giallourakis who introduced the AYA Cancer Researchers from Dr. Alex Huang’s Lab of UH/Case Medical Center, including this year’s Steven G AYA Cancer Scholarship recipient Dr. David Askew.
After the presentation of AYA Cancer Researchers, a video was shown to the entire group. Thanks to the Meredith A. Cowden Foundation for sharing an important video titled “A Day in the Life of Young Adults with GVHD (graft vs. host disease)”. The video provided the perfect testimony for the importance of supporting AYA Cancer Research. (This video can be found in our blog or at the Cowden Foundation website.)
After the brief, but impactful program, the musical sound volume was kicked up a notch or two through the awesome efforts of DJ Nick Mavroides who played both Greek and American dance tunes. Needless to say, we danced the night away!!! OPA!
What a night indeed! We must thank all our Sponsors for helping fund the event, our Silent Auction and Chinese Raffle, 50/50 Raffle, Side Boards, and Lots of Liquor Donors for contributing all the wonderful prizes that helped create such an exciting evening. (Please visit our website for the Fundraiser 2013 power point presentation that identifies all our Sponsors and In Kind contributors.)
In addition, we must thank our entire fundraising team under the direction of Tina Poulos. The Fundraising Team included: Jean Hillman, Mary and Jim Diamond, Elaine Campbell, Shawna Hofstetter, Toula Pyros, Myrta Holden, Lee Santarelli, Helene and Anthony Santerelli, Elpida Kosmidis, Betty and John Poulos, CJ Mosure, Donna Vassos, Goldie Doukas, and Nick Giallourakis. These key individuals took time out of their daily lives to ensure the event would run smoothly and be successful.
Other very important individuals were Irene Steffas, Becky Giallourakis, Debbie Cooper, Diane and Nick Kariotakis, Polly Furey, Betty Rozakis, Gabby Kariotakis, Maria and Steve Alex, Catherine Morrison, Maggie Steffas, Ellie Chrisman, Claude Campbell, Tracy Michael, Michael Diamond, Josh Walsh, Phillip Cooper, Nick Rozakis, Nick Petrakis, and Tammy Asimakis.
Also, thanks to all the folks who prepared the delicious home made desserts!!! I felt like we were having a Dessert Bake Off!!!
Lastly to our entire family and friends who continue to support us each and every year. Without your support and love we could not continue our mission.
Please remember that our fundraiser is about remembering our loved ones who have lost the battle to cancer and to honor those who continue to wage the war on this horrible disease.
We will FIGHT!
We will CONQUER!
We will not rest until there is a CURE!!!
FIGHT! CONQUER! CURE!!!
God Bless each of you.
Sincerely,
Angie and Harry Giallourakis

 

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HOPE FOR THE NEW YEAR!

Dear Friends,

As 2012 comes to a close it is not uncommon to reflect on what the New Year will bring us.  We create a list of goals to accomplish and try to prioritize them. If you were to ask me what was at the top my list there would be one word:

 HOPE!

HOPE for our children (young and old).

HOPE for our RESEARCHERS as they spend endless hours in the laboratory trying to find ways to isolate and stop cancer in its tracks!

HOPE for our ONCOLOGISTS as they treat our children with latest methods available.

HOPE for our NURSES, SOCIAL WORKERS and PSYCHOLOGISTS as they endlessly care for our children.

HOPE for the helpless PARENTS who ache for their CHILDREN.

HOPE IS MY PRIORITY. 

WITHOUT HOPE WE HAVE NOTHING!

Please join us in creating HOPE as we continue to support our researchers, doctors, and staff in 2013!

We will fight cancer!

We will conquer cancer!

We will cure cancer!

FIGHT! CONQUER! CURE!!!

See you on Saturday, January 26th, 2013 for our Annual Fundraiser as we

TAKE A BITE OUT OF AYA CANCER!!

Thank you,

Angie

GVHD – A Day in the Life Of

The video provides a sensitive perspective on the lives of four young people (including Steven G) dealing with life after Bone Marrow Transplant and having GVHD. The Video was made possible through The Meredith Cowden Foundation.

Thoughts from the Cowden Foundation GVHD Symposium

 

Last Friday I attended the Cowden Foundation GVHD Symposium in Cleveland, Ohio.  Oncology Researchers, Physicians, Nurses, Bone Marrow Transplant Survivors and Caregivers/Families participated in this highly informative event. Both professionals and lay people sat together and learned about the most current research in the field of Graft Vs. Host Disease (GVHD), a sometimes life threatening, often debilitating condition, that occurs following a life saving Bone Marrow Transplant.

The day was one filled with mixed emotions.

I was:

Gratified to learn of new research on the horizon;

Irritated by the lack of funding available for such a rare condition;

Grief stricken by the parents who lost their child to life threatening effects of GVHD;

Emotionally charged seeing young and old survivors trying to create meaning to their “new me”,

and

Supportive of  Christy, a young woman bravely preparing for her own Bone Marrow Transplant.

DON’T GIVE UP!

Thank you Cowden Family for their vision to promote GVHD Research!!!

Christy with her Glittered Stripe!!!

Sen. Toomey Cosponsors Bipartisan Resolution For Teen Cancer Awareness Week

WASHINGTON, D.C. – U.S. Senator Pat Toomey (R-Pa.) yesterday cosponsored a bipartisan resolution designating the third week of January 2013 as Teen Cancer Awareness Week. The resolution is sponsored by Sen. Bob Menendez (D-N.J.).

“Cancer is the leading cause of death from disease for teenagers between the ages of 15 and 19, and it is important to raise awareness about this deadly disease and the unique medical and social issues facing teens with cancer,” Sen. Toomey said. “Pennsylvania has made amazing progress in combatting teen cancer, and I am grateful to the Children’s Hospital of Philadelphia (CHOP) and organizations like Alex’s Lemonade Stand Foundation for all the hard work they do in helping our teenagers.”

“We are grateful for Sen. Pat Toomey’s leadership on this important resolution. While 80 percent of all childhood cancers can be cured, much work needs to be done since cures often come with challenges – particularly for teens. Advocacy opportunities like Teen Cancer Awareness Week provide a national forum for teens to seek the support they need from one another and lend their voices to this important cause,” said Steven M. Altschuler, MD, Chief Executive Officer of The Children’s Hospital of Philadelphia. “By joining Sen. Robert Menendez in making this issue a priority, Sen. Toomey is helping to advance America’s fight against cancer.”

“We are honored to be based in the state of Pennsylvania where Sen. Pat Toomey has designated the third week of January 2013 as Teen Cancer Awareness Week, joining Sen. Robert Melendez in recognizing the importance of kids facing cancer,” said Liz Scott, Co-Executive Director of Alex’s Lemonade Stand Foundation, a national nonprofit based in the suburbs of Philadelphia. “As an organization funding important research toward finding cures for all kids with cancer, we know how important it is to support patients throughout their journey, including the formative years of their teens. Cancer remains the leading cause of death from disease for teenagers between the ages of 15 and 19, a statistic that needs to be recognized in the public eye through awareness campaigns like this one.”

See the Original Press Release Here