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.
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.
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.
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.
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!!!
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 firstname.lastname@example.org.
Second Prize ($300) to Mindy Buchanan (email@example.com) “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 (firstname.lastname@example.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 (email@example.com) 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 (firstname.lastname@example.org) 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 (email@example.com) 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!!!
Thanks to the support of the Steven G. AYA Cancer Research Grant, I have been able to successfully transition from Dr. Kenneth Cooke’s laboratory into Dr. Alex Huang’s laboratory in the Division of Pediatric Hematology-Oncology at Case Western Reserve University School of Medicine since November 2012. Below is a summary of my research activities since joining Dr. Huang’s laboratory during year 1 of the Steven G. AYA Cancer Research Grant funding period.
Project 1: Promoting the development of memory T cells in cancer vaccines.
While immune therapy has been used to fight certain cancers and has shown early promise, there is often a failure to maintain the response against the cancer. This suggests that there is an inability to establish memory T cells that keep an immune response active over a period of time. In previous studies from our laboratory, we identified an important role for a protein called CCR5 in T cells that leads to the development of memory T cells. I am currently identifying the mechanisms that regulate the expression of CCR5 in T cells in order to enhance the development of memory T cells.
Project 2: Preventing the relapse of T cell leukemia.
One major problem with T cell leukemia is the presence of a few cancer cells that remain in the brain (central nervous system; CNS) or bone marrow (BM) after treatment. The presence of these cancer cells can lead to the return of the cancer (relapse). Using a model of T cell leukemia that was developed in our lab, I am characterizing the ability of these tumor cells to move into the CNS and BM. The goal is to eventually identify new targets for intervention that may reduce cancer relapse.
For many proteins to be turned on or off functionally in the cell, they need to be modified chemically. When there is a failure in the chemical modification, the proteins become overly active and cancer can develop as a result. In collaboration with Dr. Gutham Narla at the Harrington Institute at Case Western Reserve University, I am examining the effects of a novel class of drugs that promotes this chemical modification. These drugs are derived from FDA approved medications that are not currently being used to fight cancer. I have shown that one of these compounds can suppress the growth of T cell leukemia and promote death of these tumor cells. We are testing this drug in animal models to look at its ability to limit relapse of leukemia.
When standard treatment for leukemia fails, patients are given very high doses of chemotherapy and/or radiation to kill cancer cells. One result of the treatment is that the patient’s bone marrow, a source of blood cells, is also destroyed and must be replaced. This is known as a stem cell or bone marrow transplant (BMT). Two major complications of this treatment is that the cancer returns or there is a failure of the new bone marrow cells to function in the patient. In collaboration with Dr. John Letterio, I am examining the effects of a new class of anti-inflammatory drugs known as the triterpenoids in preventing leukemia relapse and enhancing stem cell engraftment after BMT. We believe that, when provided as a dietary supplement after BMT, the triterpenoids can improve survival in patients that receive BMT for the treatment of leukemia.
Project 3: Relieving graft-versus-host disease (GVHD).
Another complication that can occur after BMT is a situation in which T cells from the donor bone marrow attach the recipient/patient’s body. This is known as graft-versus-host disease (GVHD) and can be a significant source of illness and death in patients who have received BMT. In collaboration with Dr. John Letterio, we are examining how a protein known as Cdk5 can affect donor T cells function shortly after BMT. In previous work, I showed that Cdk5 dramatically influences the ability of T cells to travel to the lymph node where these T cells become overly active to attach patient’s tissues. I am examining how Cdk5 affects the ability of donor T cells to cause GVHD with a goal to establish Cdk5 is a potential new target in BMT to minimize the risk of developing GVHD.
Through the support of the Steven G AYA Research Grant, my ultimate goal as a researcher is to understand the interaction between tumor cells and the immune system to identify novel strategies that will result in better treatments. While tumor cells exhibit several mechanisms to subvert or hide from the immune system, we are increasing our ability to understand these mechanisms with the goal of enhancing the power of the patient’s immune system to eliminate the tumor. Support from the Steven G AYA Research Grant has given me this tremendous opportunity to work with Dr. Huang and the lab environment that he has created, which is the BEST environment possible to achieve these goals.
Askew D, Su CA, Barkauskas D, Myers J, Liou R, Chang N, and Huang AY. 2013. Dynamic regulation of CCR5 expression in naïve T cells within inflamed lymph nodes is essential for memory CD8 T cells. Case ShowCase
Askew D, Othman Y, Durand D, Barkauskas D, Myers J, Wang G, Zhou L, and Huang AY. 2013. Identification and characterization of CD8+ and CD4+CD8+ T cell acute lymphoblastic leukemia cells generated through constitutive expression of intracellular NOTCH1. Case Cancer Center Retreat
Askew D, Othman Y, Durand D, Barkauskas D, Myers J, Wang G, Zhou L, and Huang AY. 2013. Identification and characterization of CD8+ and CD4+CD8+ T cell acute lymphoblastic leukemia cells generated through constitutive expression of intracellular NOTCH1. Case Immunology Training Program (Selected as 1 of 3 Best posters)
Askew D, Othman Y, Durand D, Barkauskas D, Myers J, Wang G, Zhou L, and Huang AY. 2013. Identification and characterization of CD8+ and CD4+CD8+ T cell acute lymphoblastic leukemia cells generated through constitutive expression of intracellular NOTCH1. Critical Mass: The Young Adult Cancer Alliance
Manuscripts (In Press)
Scrimieri, F, Askew D, Corn DJ, Eid S, Bobanga ID, Bjelac JA, Tsao ML, Othman YS, Wang SG, Huang AY. Murine Leukemia Virus Envelope Gp70 is a Shared Biomarker for High-sensitivity Detection and Quantification of Murine Tumors. OncoImmunology 2013 (In Press).
Manuscripts in Preparation
1. Askew D, Pareek T, Eid S, Myers J, Keller M, Guirdo-Wolff R, Huang AY, Letterio JJ and Cooke KR. A novel role for lymphocyte expression of cyclin-dependent kinase 5 (Cdk5) in the generation of allogeneic T cell responses after BMT.
2. Askew D, Su CA, Nthale J, Liou R, Barkauskas D, Myers J, and Huang AY. Transient surface CCR5 expression in naïve T cells within inflamed lymph nodes is dependent on LFA-1 and augments helper T-cell dependent memory response
3. Askew D, Eid S, Keller M, Guirdo-Wolff R, and Cooke KR. Conventional splenic dendritic cell subsets direct development of graft-versus-host disease.
1. NIH R01 – HL111682 – Novel Mechanism of immune activation following allogeneic hematopoietic stem cell transplant. P.I. John Letterio
2. Steven G. AYA Cancer Research Grant (2012-2013; $15,000)
NIH R21 –NCI. Role of triterpenoids in regulating relapse and engraftment after stem cell transplant. P.I. – David Askew
June was a busy month in the world of PAYA Cancer Advocacy Work. I joined fellow PAYA Cancer Stakeholders (parents, survivors, doctors, lawyers, and social workers) from all over the country to walk on Washington DC for Childhood Cancer Action Day. We visited our State Legislators to encourage them to support (1) The Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act (2) The Childhood Cancer Quality of Life Act, (3) the Patients Access to Treatments Act, (4) The Federal Fund for Childhood Cancer Research, and lastly (5) we encouraged our House Representatives to join the Congressional Childhood Cancer Caucus, chaired by Representatives McCaul (R-TX) and Van Hollen (D-MD).
Also during our time in Washington DC I was pleased to participate in the Coalition Against Childhood Cancer (CAC2) Symposium. Dedicated individuals collaborated to form CAC2 to ensure that the best possible treatments and cures are made available to our children. Many of these people have lost a child to cancer, or, like myself, have a child who survived this horrible disease. I am sure you can imagine the intensity of emotions generated at the three day long event.
It is my hope that our visits to Washington DC continue to make a positive impact on our legislators. We will return as often as needed to ensure that proper legislation is enacted to protect our families from this horrible disease!!!
SUPPORTING PEDIATRIC ADOLESCENT AND YOUNG ADULT CANCER RESEARCH CANNOT BE IGNORED.
OUR CHILDREN (YOUNG AND OLD) SHOULDN’T SUFFER….
Below are photographs of many wonderful advocates who participated in Childhood Action Day!!!
ALSO, DON’T FORGET THAT SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!!!
WE WILL NOT REST UNTIL THERE IS A CURE!!!
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 firstname.lastname@example.org.
FIGHT! CONQUER! CURE!!!