Press

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!!!

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

iit_logo

 

 

 

 

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!

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 a Bite Out of AYA Cancer” Presentation

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!!!

INSURANCE FOR YOUNG ADULTS UNDER AGE 26

StevenCare: Insurance for Young Adults Under Age 26

Ed note: This was originally posted on healthcare.gov

The health care law, the Affordable Care Act, is giving young people like Steven Giallourakis, a bass player, pianist and two-time cancer survivor from Cleveland, the tools they need to fight for their health. At the same time, Steven’s mom Angie has peace of mind that her son is getting the care he needs to stay healthy.

Steven’s story started when he was 15 in 2003 and doctors discovered a tumor on his spine. Steven has since survived surgery and chemotherapy for Stage 4 Osteosarcoma and a bone marrow transplant for Secondary Acute Myelogenous Leukemia. He’s cancer free now, but the resulting chronic health problems have made it very difficult for him to continue on as a full-time student.

Thanks to the provision of the law allowing young adults to stay under their parent’s plans, Steven, 21 years old, has the peace of mind that he can still have health insurance through his father’s plan at work. The law allows for young adults to be covered under their parents’ insurance up to the age of 26. Since the law was enacted, Steven and 2.5 million other young adults have been able to get health insurance coverage through their parents’ plan.

The Affordable Care Act also bars low annual and lifetime caps on the amount that insurance companies would pay for care.

Additionally, starting in 2014, the Affordable Care Act makes it illegal for insurance companies to discriminate against anyone for pre-existing conditions, like Steven’s chronic health issues resulting from the cancer.

Says Steven: “Knowing I can go to the hospital and not have to worry about paying some massive bill that I am not going to be able to afford, it’s a huge relief.”

If you have a story like Steven’s, share it at Healthcare.gov/MyCare.

If you would like to view the You Tube Video of Steven’s Interview click on the Link below. Thanks!

http://youtu.be/0dLg0iXQiOM