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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!!!

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!!!

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.

 

 

 

 

Cleveland Hosted Critical Mass : SGAYA Fund Awards Six Researchers!!!

The Steven G AYA Cancer Research Fund participated in the Critical Mass: YA Cancer Alliance conference last week. The Critical Mass Conference was held here in Cleveland, Ohio at the Renaissance Hotel. All the participants were pleased and impressed by our fine city…and frankly Cleveland you should give yourselves a pat on the back!!!

Yes friends AYA Cancer is addressed here in Cleveland!!! The Angie Fowler AYA Cancer Institute of University Hospitals of Cleveland, The Gathering Place, Leukemia Lymphoma Society NE Ohio, Raise Above It (RAI), In It Together, and The SGAYA Cancer Research Fund represented NE Ohio as advocates, researchers, service providers to AYA Cancer patients and their families.

As part of the SGAYA Cancer Research Fund’s mission – to support AYA Cancer Research – Six Innovative Cancer Research Awards were awarded to researchers and program developers who presented and attended the conference.

Here are the awardees of the Steven G AYA Cancer Innovative Cancer Research Awards

MODELS OF CARE & PARTNERSHIPS: AYA CENTERS, PROGRAMS & UNITS

First Prize ($500) to Mike Lang and Emily Drake for their examination of the therapeutic process of Survive and Thrive Expeditions. for more information about “Reflect. Refocus. Rebuild. Live: The Therapeutic Process of Survive & Thrive Expeditions” contact mike@survivethrive.org.

Second Prize ($300) to Mindy Buchanan (buchanmi@ohsu.edu) “Leveraging Interns: A model for partnership with university systems to expand services to AYAs and increase influence inside the Academic Medical Center.”

Third Prize ($150) to Anthony N. Audino, MD (anthony.audino@nationwidechildrens.org) for “L.E.A.P. – Learning, Education, Awareness, Prevention Young Adult Cancer.” 

MOVING FORWARD (AYA BEST PRACTICES, RESEARCH, AND IMPLEMENTATION)

First Prize ($500) to Brad Love (lovebrad@utexas.edu) for “The Uncertainty is What is Driving Me Crazy”: The Tripartite Model of Uncertainty in the Adolescent and Young Adult Cancer Context.”

Second Prize ($300) to David Askew (dxa25@case.edu) for “Identification of CD8+ and CD4+CD8+T-cell acute lymphoblastic leukemia cells generated through constitutive expression of intracellular NOTchH1.”

Third Prize ($150) to Catherine Fiona Macpherson (cfmacph@uw.edu) for “The Computerized Symptom Capture Tool (C-SCAT): A Novel Approach to Exploring Symptoms and Symptom Clusters in Adolescents and Young Adults (AYAs) with Cancer.”

The Steven G AYA Cancer Research Fund was very impressed with the breadth and depth of the Poster Submissions to the Critical Mass Conference.

In addition, we appreciate the support of  conference committee, especially Heidi Adams, Fayruz Benyousef, and Rebecca Block, for allowing the Local Spotlight on NE Ohio’s AYA Cancer Programs.

Lastly, it was great to see familiar faces:) There are so many dedicated people out there trying to make a difference.

Collaboration is the key to finding better ways to treat and cure AYA Cancer!!!

We will Fight! We will Conquer! We will Cure cancer!

FIGHT! CONQUER! CURE!!!

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