Advocacy

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!

edsmen

 

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:

bmt image

 

 

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

September Is Childhood Cancer Awareness Month

There is a movement happening in our country.

A movement to increase public awareness about Pediatric, Adolescent and Young Adult Cancer.

Part of that movement is currently involved in the establishment of a centralized event calendar to inform the public about upcoming Childhood Cancer Awareness Programs.

 Please take a moment and visit this link:

 http://curechildhoodcancer.ning.com/page/pac2-september-2012-national-childhood-cancer-awareness-event-cal?xg_source=msg_mes_network

And learn what programs are taking place in your community!

WE WON’T REST UNTIL THERE IS A CURE!

FIGHT! CONQUER! CURE!!!

First Descents Provides Life Changing Experience for Steve G!

From the First Descents Website: “During the First Descents experience, young adult survivors and fighters are empowered through conquering legitimate outdoor challenges to push their limits and face their fears, and by doing so, they are able to regain the confidence and self-efficacy lost to cancer. First Descents places an emphasis on each individual’s experience and provides the right support for every participant to achieve their goals for the week.  The experience is designed to allow healing to happennaturally and organically – no forced conversations and no structured group sessions or therapy.” Visit First Descents at : www.firstdescents.org

The Steven G AYA Cancer Research Fund supports opportunities for YA Cancer Survivors to regain that sense of control that is often lost due to Cancer.

Using those newly learned skills!

Enjoy some of Steve’s photos courtesy of First Descents!!!

While kayaking Steve didn’t have time to think about the effects of cancer and cGVHD!

Survivorship: Pediatric, Adolescent, and Young Adult Cancer Survivorship Act

Background

There are over 350,000 survivors of childhood cancer in the United States today. Two-thirds of these individuals are likely to experience at least one late effect of treatment, and almost one-fourth will face a late effect that is serious or life-threatening. Childhood cancer survivors may face a range of late effects of their disease and treatment, including second cancers, heart and lung damage, osteoporosis, financial pressures, psychosocial issues, employment and fertility problems.

A 2003 Institute of Medicine (IOM) report titled, “Childhood Cancer Survivorship: Improving Care and Quality of Life” (co-edited by the founder of the Children’s Cause. To order this document visit https://download.nap.edu/catalog.php?record_id=10767&utm_source=Network&utm_medium=Widgetv2&utm_content=v2&utm_campaign=Widget ) analyzes issues around care for this population and proposes a policy agenda that would improve health care delivery, strengthen investments in education and training, and expand research around late effects and health disparities. Legislation to improve the long-term outlook for survivors of childhood cancer has been introduced in Congress and is derived from the IOM report recommendations.

 

Legislation
Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act

On September 22, 2011, Senators Jack Reed (D-RI) and Kay Bailey Hutchison (R-TX) and Representatives Jackie Speier (D-CA) and Michael McCaul (R-TX) introduced the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act (S.1613/H.R.3015). This legislation will:

  • Develop pilot programs to evaluate model systems of care and identify the most effective ways to provide follow-up care to childhood cancer survivors;
  • Enhance research to ensure that the late effects of new therapies can be followed effectively;
  • Create grants to establish comprehensive long-term survivorship clinics to improve access to follow-up care; and
  • Convene a workforce of educators, advocates and providers to develop models in relevant psychosocial services, establish curricula for continuing education, and strengthen the emphasis on psychosocial care for childhood cancer survivors.

CCCA Role

Children’s Cause for Cancer Advocacy (CCCA) worked closely with Members of Congress and Congressional staff to craft provisions and garner Congressional support for the introduction of the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act. CCCA is committed to advancing this critical legislation to improve the care and quality of life for survivors of childhood cancer by meeting with Congressional staff, educating members of Congress, advocates, other childhood cancer groups and the public about the importance of this bill to the care and quality of life of survivors of childhood cancer.

On March 26, 2012, the Alliance for Childhood Cancer sent a letter to Members of Congress supporting the legislation. The letter included CCCA’s signature, as a member of the Alliance.

Take Action to Ensure Funding for Childhood Cancer Data Collection and Reporting Activities

March 14, 2012

Jump to Action Alert

Dear Childhood Cancer Advocate:

On March 13, Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) sent a letter to Senate Labor, Health and Human Services, and Education Appropriations Committee requesting funding for childhood cancer surveillance activities in the fiscal year (FY) 2013 appropriations bill. We are asking for your support in this effort – please contact your Senators and ask that they sign Senator Reed and Isakson’s letter.

The Reed-Isakson letter specifically asks that the committee provide funding to improve childhood cancer surveillance conducted by the Centers for Disease Control (CDC).  These efforts enable researchers to monitor trends and incidences of childhood cancer to better understand the disease, ensure appropriate treatment, and track long-term health outcomes.  These goals are consistent with the Caroline Pryce Walker Conquer Childhood Cancer Act, which was signed into law in 2008.

The Labor, Health and Human Services, and Educations Appropriations Committee has provided funding to the CDC for these activities in the past, which has helped states transform information technology infrastructure through the expansion of electronic reporting.  This activity has allowed researchers to rapidly report critical information to state cancer registries.  Capturing this data will expand our knowledge about childhood cancer patterns – including diagnoses, treatments, and survivorship – and ultimately enhance treatment for children with cancer.

Please take action today by contacting your Senators and urging them to sign Senator Reed and Isakson’s letter in support of funding for childhood cancer surveillance by filling out the form below.

Thank you for adding your voice to this very important cause.

Sincerely,
The CCCA Team

Last year’s NE Ohio CureSearch Walk