Advocacy

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.

 

 

 

 

Angie’s guest post at Cancer Knowledge Network

https://cancerkn.com/getting-holidays-caregivers-point-view/

SAVE THE DATE: Take a BITE Out Of Cancer Fundraiser – JANUARY 25, 2014

Hello Friends of the Steven G AYA Cancer Research Fund

Just a friendly reminder that our

Annual AYA Cancer Fundraiser

– TAKE A BITE OUT OF CANCER!!! –

is scheduled for

Saturday, January 25th, 2014

 7 pm – 11:30 pm.

The event will take place at the

St. Demetrios Cultural Center

22909 Center Ridge Road

Rocky River, Ohio 44116.

Live Jazz Music , DJ Sounds by Nick Mavroidis, Dinner and Dancing, Raffles, Silent Auctions

ALL PROCEEDS GO TOWARDS

AYA CANCER RESEARCH,

EDUCATION AND WELLNESS PROGRAMS

WE SINCERELY HOPE YOU WILL BE ABLE TO JOIN US ON SATURDAY, JANUARY 25TH, 2014!!!

PLEASE DON’T FORGET THAT

Each year 70,000 young adults ( 18 – 39 years) are diagnosed with cancer!

The survival statistics for adolescents and young adults with cancer have NOT  improved since the 1970’s!!!

Too many young people suffering and too many young people losing their lives to CANCER!!!

We will not rest until there is a cure!!!

FIGHT! CONQUER! CURE!!!

For more information please contact: angie@fightconquercure.com

TICKETS: $40 per person

You may purchase your tickets on-line or mail your check  (payable to The Steven G AYA Cancer Fund) to

The Steven G AYA Cancer Research Fund 

2368 Georgia Drive

Westlake, Ohio 44145

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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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The Village Project: A Mission to Serve

 

Life is never the same when you or a family member is diagnosed with cancer. Although people are affected differently by a cancer diagnoses it is fair to say that the common theme is feeling enormous stress and anxiety. Stress and anxiety permeates all aspects of one’s life: such as work, home life, career and community participation.  Stress and anxiety are often caused by feeling fearful about the future or too ill  (or have a family member that is ill) to go to work or school, cook dinner,  read your child a good night story, mow the lawn, or go to church or synagogue. Sometimes, stress and anxiety can manifest itself as a  feeling of being emotionally immobilized which results in being too angry or sad to tell family or friends how you really feel.

Executive Director of The Village Project, Barb Harrell understands how people are impacted by cancer. She has had several family members diagnosed with this horrendous disease and knows first hand that people often need help with meeting basic needs like having a meal cooked for them or their family.

Barb believes she has been called to serve her community.  The Village Project is the outcome of that calling to meet the needs of cancer patients living in Bay Village, Avon Lake and Rocky River, Ohio.  The Village Project’s mission is “to come together as a community of all ages to provide nourishing meals and extended care and service to our neighbors experiencing cancer.”

What a gift!

Some of us are fortunate to have family and friends near who can assist us as we deal with the trials of cancer. We are comfortable asking  a sibling or neighbor to mow the lawn, throw a load of laundry in the wash,  or help prepare a meal.

But what about those persons not so fortunate to have family living close by? Barb says that many cancer patients are ALONE!

Barb and her wonderful team want to help people who feel isolated by their disease. Her team consists of staff members and volunteers (from Brownies to Senior Citizens) who desire to help make a difference in their community. As I walked through The Village Project on West Oviatt Drive in Bay Village it was pretty obvious that much love and dedication went into the floor plan and design of the facility. There  are aprons  hanging on a wall with high school students’ names indicating that they have earned the reward of being a regular volunteer. In another room one can see a Wall Mural of a Tree with Hand Prints courtesy of the local Brownies Troop. Photographs of volunteers abound indicating that this organization wants to serve people of all ages.

I recommend that you visit their website at www.ourvillageproject.com to learn more about The Village Project: you will  see photographs of the activities conducted by dedicated individuals, learn how to volunteer and support The Village Project and of course, find out  how to GET HELP!

Barb Harrell, Executive Director

Volunteers for The Village Project

LATEST UPDATE: HONOR AND SERVICE

 

macgladry

We are HONORED to be selected as Charity of the Month by the McGladrey Group in Cleveland, Ohio.

This year McGladry LLP of Cleveland, Ohio selected the Steven G AYA Cancer Research Fund as one of their Charities. The months of September and October will be filled with opportunities to raise money and awareness about AYA Cancer.

We thank McGladry LLP for their generosity and belief in the Steven G AYA Cancer Research Fund as we continue to raise money for research, education and hope for the future of our young people fighting this terrible disease!

Please take a moment to visit http://fightconquercure.org/birdies-fore-love/ for more information!

SERVICE AND SUPPORT FOR PEOPLE BATTLING CANCER

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Smith Center for the Healing and the Arts 2013 Graduates

Last week I had to pleasure of participating in an intensive week long Integrative Patient Navigation training program at the Pearlstone Center in Baltimore, MD. Our training was sponsored by the Smith Center of Washington DC http://smithcenter.org/.

How fortunate I was to be part of a group of wonderful, kind and dedicated individuals who desire to serve cancer survivors and their families. All of the participants had experience with cancer: professionally or personally. Most, I should state had a PERSONAL experience with cancer. Each of us shared our experiences with cancer which lended itself to the learning process. No stone was left unturned. Integrative Patient Navigation is a serious and heartfelt vocation. Our lessons began in the early morning and stretched into the evening hours. They were filled with research based information that will enable us to appropriately serve survivors and their families. Our experiences went beyond the text book. We were encouraged to engage each other and simulate  patient navigation to ensure comprehension.

So what is Integrative Patient Navigation?

According to the Smith Center “Integrative Patient Navigation in cancer care refers to personalized assistance and support offered to individuals and their caregivers facing cancer.”

An Integrative Patient Navigator can (1) facilitate access to treatment, (2) honor the cultural and religious believe of the individual, (3) increase patient’s knowledge of resources, tool and skills to help them cope with their disease, (4) provide information  and teach about the healing power of nutrition, stress reduction, mind-body skills, and creative resources, and their role in treatment and survivorship, (5) support patients and caregivers emotionally and spiritually, (6) help improve the quality of the cancer experience, (7) empower individuals to become more engaged in their health care experience and healing process, and (8) be available to the patient throughout the course of the cancer experience, from screening through diagnosis, treatment, recovery, survivorship, including recurrence and/end-of-life (Smith Center, 2013).

Many of you may have (or will) receive services from an Integrative Patient Navigator. They are highly trained professionals, and are often oncology nurses, oncology social workers, integrative practitioners, cancer survivors, or former caregivers.  They are also people who deeply care and want to ease suffering from this horrible disease.

From time to time I will be including information about Integrative Medicine. In addition please look for a new  Resource Section on  Integrative Medicine.

Please let me know if you have any questions about Patient Navigation.

We are in this together and we will not rest until there is a cure.

FIGHT! CONQUER! CURE!!!

Have Hope and Be Courageous!

What’s New? Or…Wow summer is almost over and…..

DSC02364June 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!!!

FIGHT!

CONQUER!

CURE!!!

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!!!

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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!!!